From leader to left-behind – My personal battle with mental health and chronic illness

How my mental health and chronic illness are intertwined

In a year that presents an obvious event in which to discuss on what could be the most important World Mental Health Day ever, I wish to tell a story that offers an escape from Coronavirus, pandemics and lack of toilet roll at your local supermarket.

I can’t promise you it will be anymore cheery than what’s going on outside your window right now in this surreal year. In fact, it will almost certainly take you to some uncomfortable places – but it should. Because until talking about mental health is no longer uncomfortable for the general population, then it is something that needs to be discussed. It could be the difference between life and death.

This is my story of mental health and how it has been impacted by my chronic health condition over the years.


This article builds upon points raised in these previous pieces…


To be young is to be resilient

When I was a child with Juvenile Arthritis, I can’t sit here and say that my mental health was impacted by my chronic illness at the time – because I have very few unhappy memories that suggest it was.

Yes, I deal with some trauma around separation from the many nights I spent left alone in a children’s ward. But that only really converted to a problem when I became a parent and heard my son repeat those chilling lines of ‘Daddy, daddy, no, no more…‘ back to me – but that’s a story for another time.

I have memories of great summers, family holidays, kicking a ball around with my brother at the park, as much as I have memories of being on crutches whilst my siblings played hockey or sitting in a wheelchair as I watched them ride rollercoasters. But it didn’t bother me. I was in pain, subjected to some terrible tests and treatments and, for long periods, immobile but I was happy enough.

From the ages of 11-14, it was what could be considered a different childhood to the norm, made up of long periods of homeschooling and weeks in the hospital, but it was by all accounts perfectly acceptable to me. After all, you only have one childhood – you don’t know any different.

The ‘dump truck of life’

If I had a miserable week in the hospital, I soon bounced back. I was far more resilient then than I am now, as a battle-worn, tired adult, who now nurses the tyre marks of the dump truck that is life. The dump truck which has run over me, reversed back and gone once more for luck over the years.

Those years alone in the hospital. Hours made to sit in waiting rooms as I was studied by people with arthritis six or seven times my age. The unwelcome ‘you’re a bit young for that, aren’t you?’s. The missed school trips and sitting on the sidelines. The slips, trips and falls to the biting laughter of an unsympathetic audience – a sound that can only be found in a high school playground. These all impacted and shaped my mental health, but at the time, I had no idea.

And here lies one of the gotchas of mental health. Often, you don’t know that something is being detrimental to your mental health until years after the event. Unlike a headache, broken leg or a bad back, where the point of injury is pretty obvious, your mental health can be damaged for long periods until you are even aware of it. Imagine looking down one day and noticing you had broken a toe weeks ago. It’s a worrying thought of what that would look like, but that’s what can happen with deteriorating mental health. In my experience, it’s noticed by others before you realise you have a problem.

An unhealthy relationship between my mental health and chronic illness

I first started having difficulties with my mental health in my early 20’s and it’s not uncommon – it’s one of the reasons Early Intervention services and such like are set up in the UK for young adults.

I had been perfectly healthy mentally, and then one day, my arthritis returned. Yet, it didn’t just return as the semi-controlled version in my late-teens. It reappeared with a bang, and a whole host of new issues impacting my skin, energy levels and newly affected joints, not to mention the pain.

My Juvenile Arthritis had returned but this time, it had evolved to Psoriatic Arthritis too. I had the unmistakeable patches of scaly skin but I also had blisters on the palms of my hands and soles of my feet combined with some very noticeable and confidence-sapping rashes on my balding head.

From leader to left-behind

I was around the ages of 24-26 when this happened. I had quickly built a career as an IT Manager for myself in education. Going from a part-time IT technician out of university to get some experience, to the organisation’s Network Manager in less than six months. A couple of years later, I was in charge of two teams split across two campuses as part of the high school Academies project here in England. I helped design an £18m new build and built an entire support team from scratch on very tight salary restrictions.

I loved my job. I’m not a confident person, but I can easily say I was very good at it. I knew it, and the people needed to make everything function inside and out, I felt valued, and at 24 years of age, didn’t see a limit of where that progression would end. I had big plans.

The aforementioned flare didn’t happen overnight. Pain and stiffness returned. Followed by fatigue. I started needing the odd day off. Then I’d get the usual infections as treatments were upped to try and control the spike. As was the way back then, nobody knew I was ill. I didn’t want any weak point in my armour as I climbed the ladder. People had no idea that most mornings, I was vomiting because of the Methotrexate, dusting myself off and getting into work on time every single day.

The onset of mental health problems

Around the same time this flare started, I had my first experience with mental health problems that I was aware of.

Looking back, the onset was a classic case of depression. Starting as low mood, depression, overeating for comfort, feeling worse as my body ballooned, being reckless with my finances as I bought unnecessary items to try and fill the void I had from the depression. I was flat; I was numb, I had no emotions, good or bad – I did stupid things to try and fill the hole where enthusiasm, happiness and motivation once resided. Stupid things I am still paying for today, but at the time, I wasn’t aware I was unwell.

I can’t tell you what caused my mental health and chronic illness to deteriorate at the same time. I believe it was because my disease returned, and it was a deafening reminder of the monster I had been hiding in the box since I was 18. My arthritis was always going to return, but just like 2019, I wasn’t ready to accept it. Especially now, I had a career.

Other schools of thought suggest there is a link between inflammation and mental health or that my depression and low mood triggered an immune response. Either way, it’s a chicken and egg scenario.

The end of an era

Over the next two years, my mental health and chronic illness both deteriorated at a frightening rate. I developed a limp, needed crutches again, had months off work – which only fuelled the depression as I feared for my place, my role, the project baby I had worked tirelessly on for 7-8 years at this point.

By the time I was 27, after less than a year off work with this flare and mental health issues, I received a letter to say it was going to be recommended to the board that my employment should be terminated.

Typical to my style, I resigned a week later. I didn’t want to give them the satisfaction of sacking me.

This is what I’m fighting for

In the 8-9 years that have passed since this event, I’ve grown an indescribable amount. I no longer hide my health issues. I embrace them. And, as you read this now, I’ve gone as far as to tell the world about them in the hope of education and change.

In that dark period in my mid-twenties, I went as far down as you can get whilst your heart is still beating and crawled back out the other side with a suit of scars, broken dreams and forgotten confidence. Until I tell this story today, only my then-fiancee, now wife knew just how dark of a place that was, how close to destruction I came and even then, there are moments I dare not tell her the full detail of.

This is what makes poor mental health such a dangerous thing. To be so close to destruction and your friends, family, people you thought would take a bullet for you being either completely unaware or worse still, unwilling to step in because they didn’t know what to do or how to handle the situation. At my worst, I developed psychosis and started hearing and seeing things that weren’t there – upon finding this out; one friend asked me ‘so are you f**cking mental then?‘. Is your mouth open? Yep, mine was too. I remember thinking at the time a simple ‘are you ok?‘ will do.


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I wasn’t ‘mental’, broken or schizophrenic as one friend insensitively asked. I was simply physically broken and mentally exhausted from living with chronic illness. I’m living two lives, the ‘flaring me’ and the ‘remission me’ and it’s every bit as exhausting as it sounds. Everyone has their limit and a series of events converging at the same time meant I found mine.

The important takeaway is that despite the lack of help from so-called friends and an innocent ignorance from family, I found my way back out of that hole and every day I fight to stay away from the edge. The event horizon of depression.

On reflection – it was wrong. I was wrong.

As a man in my mid-thirties today with a beautiful son and going through a similar experience with my physical health – I realise now that what happened to me in that job was very wrong.

I’ve intentionally kept details vague as it’s the first time I’ve openly talked about what happened and trust me, if I ever have the confidence to lift the lid fully on what happened there, the lack of support, bullying, obvious grounds for unfair dismissal and breaches of the Equality Act 2010, you would be far more shocked than what I have disclosed – but that’s for another time.

Going through a similar experience this year and seeing how wonderfully supported I have been by my employer, colleagues checking in on me, reasonable adjustments and steps taken to try and help me with my new/returned disabilities whilst I ride this wave out has been incredible. It gives me confidence that in small ways, we are learning to recognise mental health with the same importance as physical health in this country. It’s also opened my eyes, however as to how badly and illegally I was treated when this last happened all those years ago.

I spent the best part of twenty years blindfolded. Only seeing half of the picture as I obsessed over my arthritis and chronic illness. It took going through that terrible experience and seeing the good and the bad side of humanity to realise I have to treat my physical and mental health as one and the same.

High, persistent levels of pain, fatigue, lack of sleep, horrific side effects from medications, always having to cancel – these all impact your confidence, mood, resilience, i.e. your mental health.

I’m disappointed in myself that I never put the two together until now, but through articles such as this and campaigning, I hope to raise awareness of the connection between our mental health and chronic illness. Not just to raise awareness for those who are unaware, ignorant or hold strong ‘old school’ views on the subject but to support other people like me, who, once they are aware of that connection can start treating it as they would their physical symptoms.

I don’t want anyone to go to that dark place I went to. That place where all hope is lost and there doesn’t seem to be any other option. I don’t want anyone to lose their jobs or financial security because of an employers lack of understanding or ability to support either.

Learning to manage my mental health, as I do my physical health

Clearly, I see things very differently now and that helps me to manage my condition and stay away from the claws of depression as best as I can. Even though we are occasionally forced to share one another’s company.

I’ve always felt like I’ve been playing catch up my whole life – I am top weight in the Grand National and have to work that much harder than everyone else to be on par, succeed and not be judged as ‘you did well, considering’. It’s how I built my career, but I recognise now that it also contributed to the deterioration of my mental health.

My fear of missed opportunities and ‘making hay when the sun shines’ when my arthritis was controlled meant I didn’t rest when I needed to, I didn’t switch off, answered the work phone at all hours, didn’t listen to the signs with blinding migraines etc. – hell, at one point I was drinking cans of Relentless energy drink with Anadin Extra and Pro Plus dissolved in them for lunch to get through the day. It could have killed me and in some ways, I’m thankful my mind put me in a bed before my physical health completely broke down.

Moving forward

I’ve removed toxic elements from life, including some people. I’m still learning to pick my battles. Whether that’s removing myself from social media debates, issues out of my remit at work, arguments that could be avoided etc. If you see me ‘disengage’ for a while, that’s not me ‘hiding’ or ‘being unsociable’, that’s me managing my mental health and you know what, I’m proud to claim that.

Everyone has a limit, it’s recognising and knowing what to do when you approach it that matters.

It took becoming a parent for me to place the appropriate value on good mental health and the kindness of others to appreciate where I had been mistreated. I don’t want my son to suffer like I did all those years. I want to be a role model for him as much as secure my future good mental health, to be around for him as long as I possibly can.

My personal message to you

Dad and son on the beach

There is no quick fix for mental health problems. No plaster or pill you can take. A holistic approach is needed. A lifestyle review and a need to understand what is important to you and when and how to ask for help. An approach that works regardless of the state of your physical and chronic health.

Managing your mental health is an ongoing process, and with time, the cracks will heal, and even then the scars may remain – and that’s ok because those fault lines act as a warning of where I’ve been. A cognitive growth ring serving as a reminder of how I’ve evolved from this period of poor mental health from the last in my twenties.

I’m not fixed, cured or healed; I’m learning to repair and manage my mental health. And during that process of restoration, I’m building in greater resilience from an improved understanding of myself and willingness to ask for help, and I encourage you to do the same.

From the ashes of previous battles against depression and anxiety, I’m building a more robust future for my family and me. I’m the architect of my future happiness, but embracing the support available is what turns those plans into a strong defence against future threats to my mental health.

If you need to talk to somebody or were affected in any way after reading this article, please call Samaritans now on 116 123. It’s free and open 24hrs a day, 365 days a year.

You can also contact your GP or local Wellbeing Service or visit this page for more info on free counselling services: https://www.nhs.uk/conditions/stress-anxiety-depression/free-therapy-or-counselling

Chronic pain – why we seek comfort in others who suffer

I’m lucky. I have a large family around me, all within 20 miles of where I live. But when it comes to talking about my chronic pain and illness, I find myself drawing comfort from those I have never met. In this post, I explore why.

You have to experience it to understand

I have a loving family, but over this dark period of my life, this last year where it feels like it has been one thing after another. There has been something that has surprised me above all else since deciding to go public with my story. That something is the kindness and support of strangers.

I have been amazed at the support I have received from people all around the globe who I never have, and most likely never will meet. They understand my pain and suffering more than any family member – and I’ve only been writing about this since late 2019.

It’s no slight on my family. Although they have been there since I was 12 years old in a wheelchair and spent goodness knows how many days beside my hospital bed. You simply cannot understand chronic pain unless you’ve experienced it.

At last count, I had over 1500 people regularly following my ramblings via social media and mailing list. That figure alone amazes me. What I find more staggering is how I’ve stumbled upon a world I never knew existed, despite living with arthritis for over 25 years. A world where strangers genuinely care for my struggle; support me through the bad times and celebrate my small wins.

The connection? They experience and understand chronic pain.

Everybody hurts

I said to somebody recently that arthritis hurts far more people than just the person taking the pills, and the same applies to chronic pain.

Every time I am a zombie because I got no sleep the night before, my wife and son suffer. Every time the depression from chronic pain kicks in and I go ‘off the grid’ for a few weeks, my siblings and friends suffer. Each time I lose my temper because my patience with pain has expired, my parents or work colleagues suffer.

It’s not fair and triggers a cycle of guilt, self-blame and loathing that comes second only to the pain and makes talking to those people you care about harder.

People in constant pain are often at the end of their tether, shattered from lack of sleep or fed up with not being able to do what they love. Throw family members and years of previous history into that tinderbox and watch the fireworks fly!

Family and friends want to support, of course, they do, but they will never understand. For example, how many times have you tried to open up to someone only for them to say the dreaded ‘it’s like when I…’ and they reel off a story about that time they had a bad back for a few days once? Your pain is temporary; mine is permanent!

The ‘you look well’ paradigm

Worse still, the infuriatingly common double-entendre of ‘you look well‘.

It’s something that makes me smile uncomfortably or brings me out in a cold sweat depending on who offered the opinion, for example:

  • An old friend – probably just being nice and doesn’t know what else to say
  • A particularly unsupportive family member or work colleague – suddenly you are riddled with paranoid thoughts of ‘do they think I’m faking it or something?’ or judgements of ‘why were you off work for weeks but look fine?’

Regardless of good or ill intentions, it makes a huge difference depending on who said it—coming from somebody else who also suffers from chronic pain or illness? Well, they quite simply wouldn’t say it. They know it’s a throwaway comment or icebreaker such as talking about the weather but, more importantly, they understand how anxiety-inducing such a thing can be.

When speaking with somebody who also suffers, the conversation is more likely to be around ‘how are you doing?’, ‘what kind of pain day is it today’ or the so often overlooked by loved ones; the holy grail of icebreakers for the chronically ill: ‘can I help you with anything?’. Empathetic, unintrusive, straightforward.

Loved ones can have the best intentions in the world and can help in many ways to support us folks dealing with a chronic illness. Still, they will never be able to appreciate the relentless, energy-sapping, claustrophobic agonising ‘production line of pain’ that the likes of arthritis can bring.

A support network in strangers

Talking to strangers or acquaintances who have experience of chronic pain, who have, at one time or another, been through what you are going through right now, just get it. You don’t need to explain, justify, try and compare it to something they may have felt or defend why pain causes so many secondary issues like fatigue or cancelled plans.

There’s no baggage with an online community comprising of those with similar conditions as yours. No history or politics like we get with families. There is also more decorum. No ‘man up’s’, ‘pull yourself together’s’ or insensitive emotion which you may get when having these conversations with family.

People may be passionate about the subject but there isn’t that dynamic you may get between a father and son or brother and sister when trying to discuss your struggles.

In a recent poll on the JoelvsArthritis Facebook Support Group, just three people said they would ‘Talk to or see Friends/Family’ when asked: ‘What do you do when you’re reaching breaking point with your pain?’

With the most popular choices being ‘hot bath’, ‘listen to music’ and ‘try to sleep it off in a dark room’.

Arthritis and Autoimmune Support Group

A place to talk

After experiencing this overwhelming swell of support from my Instagram and Facebook followers and the emails I now receive daily, I started looking around at what was available for people in chronic pain to support one another. To offer an outlet for people to connect with others that understand.

I spoke to some well-known charities and people in the community, and it was clear that outside of your traditional physical support groups that meet in a village hall once a month, there wasn’t anything in terms of an alternative, especially for younger people.

I, therefore, decided to set up our Arthritis and Autoimmune Support Group on Facebook. It’s only a couple of months old, but we already have well over 100 members, all asking questions, helping each other and sharing their experiences.

It’s been great to see new members drop in and ask about people’s experience with medications before they commence treatment. Or offer their tips for what they do to help with specific issues and generally be an ear for when we all inevitably have that low day.

If you’re looking to talk to people that ‘just get it’, I recommend you check it out and get involved in a fantastic and fast-growing community.

What our members say

We asked our Facebook Group members why they seek support from those who have experienced chronic pain, as opposed to loved ones. This is what they had to say:

It’s so hard to explain but the sense of understanding makes such a big difference. It’s massive, honestly unexplainable. Even with someone you’ve never spoken to before it’s like you know them, it’s a connection. Connection of empathy.

Ali Daggett, member and runs the Under Young Skin RA blog

I love the phrase ‘connection of empathy’ Ali uses here. It sums it up perfectly. My experience when dealing with loved ones such as family members is one of sympathy or an unwillingness to accept the situation. Rarely one of an empathetic nature.

Most loved ones have never had Chronic pain or felt anything near it… To talk to another person who understands enables me to vent my anger, frustration and hurt, there’s an immediate connection and understanding and further support of encouragement to talk.

Dawn Helmore – member

Dawn has a fascinating approach. She is mindful of loved ones being upset by her suffering so chooses to discuss the daily challenges and frustrations of her health condition with others in a similar position, to protect those around her—such a considerate strategy.

A thank you

I want to draw this piece to a close by taking a moment to say thank you to everybody who has supported me over this weird and unsettling year. Whether you simply supported my writing by taking the time to read or share my work, sent heartwarming messages during times when I was struggling or the unexpected emails that simply reach out to say ‘keep up the good work’.

Those random acts of kindness make a huge difference to someone’s day when they’re in pain and I now consider you a key part of my support network.

How you can help

If you’re a friend or family member of somebody living with chronic pain and are looking for ways to support them, why don’t you start with these simple tips:

  • Tell them they are doing ok
  • Try and help them focus on tomorrow rather than looking back on the past/what they used to be able to do
  • Reassure them that there will be better days
  • Ask if there is anything you can help with – not everybody wants to ask for help, but it doesn’t mean they won’t accept it when offered. Either way, they will appreciate the sentiment
  • Offer them a distraction – a walk, movie or something as simple as a cup of tea
  • If or when they are ready to talk, listen, speak when they have finished offloading (there may be a lot bottled up) and unless it was a chronic pain experience, don’t try and reassure them by comparing your stories of injuries! 🙂
  • If they are struggling to open up to you, recommend a support group such as ours or get them to talk to one of the well-known charities who run helplines for people to use in times of crisis. You can find some suggestions on my Resources Page.

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Shielding 2020 – An upsetting experience that we must not forget

On Saturday, 1st of August, shielding guidance in England comes to an end.

It’s been an extremely unsettling, unique and at times, dangerous period for the vulnerable and those living chronic health conditions. In this article, I wanted to capture a snapshot; the emotion and experiences of those who shielded for five months. To highlight how this is far from the end of us.

As well as sharing my own experiences, I have gathered the thoughts of Amy, Wendy and Aleta, who kindly agreed to contribute to this article. I want to take a moment to say thank you to everybody that got in touch to be involved in this; I couldn’t have done it without you. Let’s meet our contributors:

Amy Turner, who has been shielding since March and suffers from psoriatic arthritis.

Wendy Bryant, who has vasculitis and osteoarthritis and has been shielding since 21st March.

Aleta Doren, who has been shielding for almost 140 days with Interstitial lung disease, who is also a trustee of the charity www.icustepschester.org,
which supports patients and their loved ones following a stay in ICU.



What shielding has been like

woman holding sign
Photo by cottonbro on Pexels.com

Without question, shielding has been one of the most emotional experiences of my life.

I have gone months without seeing people I care about the most. My parents missed my son learning to walk, talk and feed himself. At times, I have been the lowest I have ever felt in my life. I have questioned my worth, purpose and more than anything, the burden I place on everyone around me when I am sick. I experienced inequality consciously for the first time.

I was unwell when lockdown kicked in and was receiving a lot of medical support. There was one week where I received five letters and phone calls cancelling appointments. One of those, I had waited 30 weeks only for it to be withdrawn a week before it was due. That was a low point. It was the moment where it sunk in how medically unsupported I would be during this pandemic.

A very real threat

Those first few weeks, I was an anxiety-riddled mess. It wasn’t just the concerns that everybody else had with shelves being emptied in supermarkets or worries over job security and paying the bills. My anxiety was higher than that. I was told that this virus was a threat to my life. I was paranoid of an invisible killer, and in those first few weeks, absolutely nobody around me understood the fear.

Along with those that tragically lost people, we, the chronically ill, sacrificed the most to make space for the sick through COVID.

There are a lot of broken people with chronic conditions now. So not only have we been in the most challenging situation but have lost the most in terms of support. I hope there’s a plan to ensure that the chronically ill and disabled get the help they now need. I am yet to see any evidence of one, however.

Your experiences

Amy: Surreal at first, Isolating, Infuriating, terrifying, so disturbing not hugging my teens and sleeping apart from my husband, it has been a rollercoaster of unpleasant emotions.

Wendy: Shielding has felt like a significant journey in learning about my own capacities and how I am supported by others.

Aleta: Shielding has tested me, my family relationships and my friendships on many levels.

How we feel about shielding coming to an end

greyscale photography of woman wearing long sleeved top
Photo by Kat Jayne on Pexels.com

In my article, ‘As shielding comes to an end…’ I talked about my mixed emotions over this move. How it was the light at the end of the tunnel we so desperately needed but also how normality felt so far away.

Just because I am allowed back out into the world, it doesn’t mean I feel safe. As a group of people, us shielders are incredibly anxious and paranoid. We’ve made far too many sacrifices to put ourselves at risk now, especially when nothing has changed with regards to a vaccine or effective treatment.


Read more…

I have also expressed my disappointment about how we had sacrificed so much for such little gain. And today, while some people’s ignorance and self-regard manifests with packed beaches, crammed pubs or organising protests that could wait, we the shielded, are yet even to see our families in a garden for five months.

Shielding may be ending on 1st August, but I fear we could be placed on house arrest again within weeks. Thanks to the selfish actions of the healthy.

One thing we certainly didn’t gain is any more respect, understanding or appreciation from the wider population. The very people we made space for in the hospitals. The big hitters in the media barely mentioned us, with Monday’s news eclipsed in less than 24hrs hours because the pubs reopening was a greater public interest, apparently.

https://joelvsarthritis.co.uk/as-shielding-comes-to-an-end/

Your experiences

Aleta: I am really anxious and feel vulnerable emerging into a situation full of mixed messages and misunderstandings.

Amy: Uncertain, underconfident and fearful, I have a lack of confidence that the wider public know how and why they need to keep shielders safe – a public health campaign could have improved this to help us feel more confident and improve awareness of our situation and the challenges we face. I feel changed as a person.

Wendy: I feel ok about it coming to an end. I have been living with fear of infection for over 3 years, so the next few months are another version, to me. Sometimes it’s best to feel the fear and do it anyway.

What we learned

selective focus of a boxer s fist
Photo by Ashutosh Sonwani on Pexels.com

Negatively, I learned that I could not manage my chronic condition alone. That I am vulnerable. I am different from the majority that didn’t have these restrictions placed upon them. Who my real friends are. Ones I heard nothing from in 5 months when I was in some of the darkest places in my life, frozen in fear, unable to reach out for help. I found my breaking point physically and mentally, but amazingly I never crossed it.

Positively, I learned that my wife and young son are my motivation, the reason I get out of bed in the morning; my support network. I found peace in my family and my writing.

I discovered people who I completely underestimated how much they cared for me. Who checked in without any reason other than to see how I was doing. To give me an opening to talk. I appreciated how much I loved my job through the pain I felt for not being around when I was needed the most. I spent five precious months with my boy and watched him grow from a baby to a cheeky, bright toddler. I learned that I was a role model, regardless of the low opinion I held of myself throughout.

The resilience of the chronically ill

More importantly, I learned that I was far more durable and resilient than I ever gave myself credit. That although my body may be some way from optimal, my mind can take on the greatest obstacles. In a world where society often sees the chronically ill and disabled as a burden or weak, we’re the toughest people you know. We climb mountains each day to do what others take for granted.

For we are the shielded.

A forgotten corner of society deemed too weak to risk.

And even though we forwent our treatments to make space for the sick,

We curried no favour, gained little coverage.

There was a window of opportunity, a chance to really experience.

How lockdown gave a taste of disability and how we have to live.

But the time when we were ‘in this together’ has now seemingly passed,

As people go back to normality, the shielded are left at home. The outcasts.

The Outcasts – Joel Nelson

Your experiences

Wendy: I learned that I need other people to help me with many things. I relearned that my vasculitis is a maverick disease, unpredictable and unaccountable. I learned that many people are finding the lockdown much harder than me because they faced challenges I’m really familiar with.

Amy: I am resilient. That we are a resilient family unit and the time has reinforced what an amazing husband and kids I have. I learnt that during this time the government concentrated on the needs of the majority, for example, the people that absolutely needed to get out and exercise the most were the last. I learnt the same of the media, that coverage for the issues that impacted the majority was the most important. I felt marginalised, ignored and shut away.

Aleta: I learnt a great deal about resilience, and the comfort of being supported by a loving family.

How it impacted our medical condition

woman holding man s hand
Photo by Emma Bauso on Pexels.com

Shielding caused me to take an involuntary rollercoaster ride of challenges and emotions with my arthritis and chronic pain. I was signed off work in February, so when lockdown came into force, there was only one way my health was going to go.

As my wife worked tirelessly in a hospital, and my son had to shield at home with me to reduce my risk of exposure, my issues multiplied without the help of family or childcare. By April, I was crying during nappy changes due to the pain in my knees and fingers. By May, I was on crutches and having to carry my son up and down the stairs dangerously unsteady on my backside.

It was the first time I had cried in front of him, and it broke my heart. I did the best I could in difficult circumstances, but even to this day, I feel like I failed him during those 2 or 3 months.

Joel on BBC Look East re. Shielding

What I didn’t predict was the impact it would have on my mental health. I experienced panic attacks for the first time. I became increasingly depressed, irritable and flat. I thought about suicide. Not because of shielding itself but because of how bad my disability became. The burden. The uselessness.

Imagine breaking your leg and being told there were no doctors to fix it. That’s how I felt every single day. I have never been in so much pain. I have never felt so alone.

Your experiences

Amy: Massively. After being in the house from March to June my arthritis has deteriorated, the pain exacerbated. I have been proactive in exercising indoors however my physical strength has deteriorated and despite my best efforts my weight has increased making all of the above worse and, as it turns out giving me another risk factor.

The impact on my mental health has also been massive, with anxiety and isolation. All of this while sleeping alone, eating apart and no physical contact with the ones you love and live with – it adds up to a nightmare scenario that I think only those who have done it understand.

Aleta: I have made every possible effort to improve my medical condition – I have changed my diet and cycled over 2000km on a static bike to strengthen my immunity and improve my lung function.

Wendy: My medical conditions have been easier to manage in some ways, because I have been living a calmer and quieter life. But my vasculitis and osteoarthritis remain a problem regardless of the pandemic. Medication issues were not easy but they never are. I had good support from GP and hospital, and my rituximab went ahead as usual.

What are our plans for the rest of 2020

family walking on path
Photo by Vidal Balielo Jr. on Pexels.com

Plans? That’s a sore subject for me. I don’t feel like I can make any plans until I see a government plan for the shielded going forward.

If I had a choice, I would like to make the most of the last remaining days of summer where my wife and I are not working to take Dylan out to see the world. I looked forward to this summer last year full of joy. Dylan has just turned 18 months old, and I wanted to take him to the sea, zoos, parks and all the other places that will blow his mind at this tender age.

2020 feels like it has not only stolen from me and my long term health, but my time as a father with my son. I have never felt as guilty as I have these last five months as my little boy was stuck at home with me. He was at the age where he was starting to make friends at nursery, build relationships with members of the family. I worry about his social skills. Hell, I worry about my social skills after all this!

If I am permitted to dream as big as having my freedom back at some point in 2020, I plan to continue being a better father. A father that isn’t tainted by pain, physical disability and mental torment. I want to smile. Be happy. Love things again. Rediscover my confidence.

I’m currently receiving cognitive behavioural therapy, pain management therapy and disability adjustment training to achieve this. I’m trying everything within my power to fix my broken body and mind that a virus I am yet to contract damaged.

Your experiences

Aleta: I imagine my life will be extremely restricted for the foreseeable future (I intend to continue to shield myself after 1st August – on medical advice).

Wendy: I don’t have any plans except to work out how to see my adult children, as I have not seen them since February, the longest time ever. And maybe go away with a friend, not far, not for long, last minute. Otherwise, I’m staying at home and staying safe.

Amy: To keep safe, to minimize my risks, to rebuild my physical strength. To look after my mental health. To provide my kids with some form of normality in the house and look after their mental health. Shielding has impacted them massively too.

I am so fearful that our privilege to live normally in our own home will be taken away. I have no plans to return to shopping, eating out, concerts etc. 

The shielded must not be forgotten

I will conclude with this.

There has been no media coverage of shielding ending this week, no public health campaign or government posters flooding social media. More importantly, no plan.

No plan for the tens of thousands of patients awaiting life-changing treatment or operations. In some tragic cases, these delays are the difference between life and death. No plan for those who will lose their jobs as employers ask them to return to an unsafe workplace and they put their health before their financial security.

No plan for how we undo all of the damage we have suffered as a result of our conditions being left untreated for five months while we made space for the sick. No dedicated support for the physical and mental scars of shielding that we have all, in some way, nursed. All while we sat at home obediently and watched the rest of the world do their own thing.

We followed the rules, rules far stricter than most. We gave up our regular treatments and sacrificed considerably more than the average person on the street, the street we haven’t been able to walk for five months. So I suggest that for those of us that were the first into lockdown and will be the last to turn off the lights at the end of it, we deserve better.

We deserve not to be forgotten.

As shielding comes to an end in England, do you feel safe?

On Monday, the UK Government announced that from 1st August, those of us who have been shielding will be allowed to meet outside in groups and go back to work if their workplace is secure. It also means an end to statutory sick pay and the delivery of essential food boxes for those most vulnerable to the infection.

It signals an end to what has been an extremely challenging 4 months (5 by the time it ends) for the shielded. The advice is changing because the risk of catching the virus continues to fall but do you feel safe leaving the house on 1st August?

Mixed emotions

I was lucky enough to know the announcement was coming. So it gave me some time to process it. However, I still cried as I walked my dog listening to the announcement on the radio.

It was very mixed emotions.

It was the light at the end of the tunnel we so desperately needed but it also made you realise what a long road we still had to travel.

One doctor told me that it might be Christmas before it would be safe to hug my family again and March 2021 before a vaccine would be ready for widespread deployment. So August 2020, still feels very early.

What does it mean for me?

Personally, just because we are told we can go round other people’s gardens, it doesn’t mean I feel safe to do so. There is still an awful lot of anxiety in the community of us shielder’s and from my point of view, little has changed.

Yes, the risk of transmission may be considerably lower but there’s still no vaccine. Still no magic cure for me should I catch Covid19. It simply means that there is a bed, ventilator and medical professionals free for my treatment now.

Currently, I do two isolated dog walks per day, as my health allows. I have found them stressful enough, with cyclists and joggers brushing past me with no warning and seemingly little concern for the 2-meter rule. I feel a very long way off feeling safe enough to go into a shop or round a friend’s garden – what if I need to use the bathroom? How do you join in with a BBQ without sharing condiments and touching the same surfaces?

As a group of people, us shielders are extremely anxious and paranoid by this point. We’ve made far too many sacrifices to put ourselves at risk now. Especially when nothing has changed with regards to a vaccine or effective treatment.

My experience of shielding

Without question, shielding has been one of the most emotional experiences of my life.

I was unwell when lockdown kicked in and was receiving a lot of medical support. There was one week where we had 5 letters and phone calls cancelling appointments. One of those, I had waited 30 weeks for a pain management appointment for it to get cancelled a week before it was due. That was a low point. It was the moment where it really sunk in how medically unsupported I would be during this pandemic.

This is something that the country needs to remember as things get back to normal. Along with those that tragically lost people, we sacrificed the most, in order to make space for the sick through COVID.

There are a lot of people with chronic conditions that are now broken. So not only have we been in the most challenging situation but have lost the most in terms of support. I hope there’s a plan to ensure that the chronically ill and disabled get the support they now need. I fear I may be disappointed.

First in, last out

What people need to remember is that the shielded and high risk have book-ended lockdown in a way that others haven’t. At first where ‘underlying health conditions‘ was used daily to explain those that sadly died from the virus. Like some kind of reassurance to the general population.

And again now at the end of lockdown. It is harder for us shielding now. In March, everyone was in the same boat, in it together, rainbows in windows etc. Now, families are reuniting, social media full of photos of people at bbq’s and the beach and we’re still having to shelter in place.

I am having to listen to neighbours laughing and drinking in gardens with friends. Its torture. Soon, it will be friends having a beer at the pub, watching football and I’m still sitting at home in my garden. Some are not even that lucky to have a space outside this entire time.

It forces you to withdraw. Protect yourself from the pain of it all and that’s not good for your mental health and puts a strain on relationships. It drives a stake between the shielded and their families and a divide between the healthy and the sick.

Socially disadvantaged

Shielding was the first time I ever really felt socially disadvantaged by my health condition. And, as attitudes already appear to be changing with delivery drivers no longer leaving items on doorsteps and stepping back as one example, the next six weeks I fear are only going to be harder for us.

There was a small window of opportunity where the healthy could have experienced what it was like to be chronically ill or disabled. Appreciate what it’s like to not leave your house, go to work, get your own shopping or medicine. To be stuck on the schedule of a disease, not your own.

But just as our beaches are being left littered just months after the world celebrated the apparent boom of nature in the deserted streets, we threw the chance away. Reverted to type. As humans so often do.

So much sacrificed, so little gained

As the first ones to enter lockdown under the instruction of our doctors, we were called ‘scaremongerers’, ‘paranoid’, ‘over-reactors’ by our friends, family, work colleagues and trial by social media. As the world returns to normal and we’re left to turn out the lights on lockdown, what did we gain?

The majority of us spared our lives but at the cost of our long-term health, relationships, jobs and confidence. We didn’t just do it for us – we did it for those that enjoyed that last night in the pub before they closed even though they knew the risks. The neighbours who continued to have family over throughout lockdown. The businesses that refused to close because they claimed they were providing ‘essential supplies’ (I’m looking at you, The Range!).

Do you think at any point they thought who’s doctor, nurse, bed or appointment they were taking when they were being treated for COVID when their own actions, their lack of self-control, meant it could have been so easily avoided if they just sat at home?

One thing we certainly didn’t gain is any more respect, understanding or appreciation from the wider population. The very people we made space for in the hospitals. The big hitters in the media barely mentioned us, with Monday’s news eclipsed in less than 24hrs hours because the pubs reopening was a greater public interest, apparently.

It’s this that made the personal sacrifice to my health and millions of others so sickening. It’s also why I fear what we have to witness from our homes over the next few weeks will be equally as challenging.

Share your thoughts

How do you feel about the Government’s announcement? Will you be ending shielding? How has shielding been for you? Let us know in the comments below.

The long road keeps getting longer

Firstly, I want to apologise. Apologise that this post is coming so long after the event in which I teased about on my Facebook page. As you will go on to read, the news I received from my hospital visit was neither expected nor welcome.

When I wrote my account of what happened, I wanted to ensure that I was doing so from a place that had not only given me time to reflect but allowed me to tell the story at a time that I knew would not be detrimental to my mental health. This is the latest chapter in my arthritis story.

The need for light at the end of the tunnel

Two weeks ago, I had a long-awaited consultation. The last six months have been extremely challenging since a run of infections that seem to have triggered some sort of overreaction in my immune system.

If the last six months were tough, the last three during this pandemic have been the hardest of living with arthritis in my life. The face to face consultation was a risk (thankfully, no COVID symptoms since) but it was one I certainly needed to take. I was desperate.

I had told my doctor on the phone the week prior that there was only so many weeks I could cope like this. Some days, I have been in so much pain that I’ve wanted to jump through the window. It sounds dramatic but if you’ve ever been in that level of constant, non-relenting pain (and I hope for your sake that you haven’t), then stupid things start seeming quite appealing. Just to experience a different sensation, if nothing else.

There is nothing so cruel in this world as the desolation of having nothing to hope for

Haruki Murakami

A surreal experience

Going to the hospital for the first time since the global pandemic started was a strange experience.

For a start, I could park in the nearest car park. Which was not only unheard of but very welcome given I was reliant on the use of a stick that day. The next thing that struck me was just how many people (non-staff) were wandering around the building and public areas without masks on. Just the week before there had been a clear change in the message around face coverings and the hospital were insisting on it for any appointments. However, that theme changed as soon as I reached my clinic.

I gave my details to the receptionist at a distance clearly defined by hazard tape and barriers, which was a challenge in itself. You try shouting ‘Joel‘ through a facemask several meters away and see how many ‘George? John? Paul?’ you get before they land on Joel! The whole time this amusing yet equally frustrating experience carried on, a nurse in full PPE was taking my temperature and asking about any signs of cough, fevers etc. I had experienced in the last 7 days.

Once I was cleared, I was ushered through to the familiar rheumatology waiting room at the NNUH. However many hours of my life have I spent in that room? Except for this time, it was very different.

The waiting room had been divided into two, using makeshift objects such as office dividers, chairs and even a hospital bed trolley that you’d see more at home on a ward. More importantly, I was completely on my own! There were no posters on the walls, noticeboards bare, no trollies with my usual 7-10 inch stack of medical notes. It was like I was sitting in a storeroom or an abandoned part of a building.

It was very strange but for somebody in my position, weirdly reassuring.

The consultation

For this appointment, I saw a new Dr, this was due to the COVID situation. The Dept. had to find a Dr that had not been on a COVID ward for at least 7 days and given many specialists were still helping with the pandemic effort at the time, it was easier said than done. I literally didn’t get my appointment time and location until a day or two beforehand.

I was fine with a different Dr, however. Although I have a complicated history and it’s always frustrating repeating the usual ‘need to knows’, such as how my inflammation has never shown on blood tests and that my joints don’t typically swell. I welcomed the opportunity of a new opinion given everything that had happened over the last 18 months.

I won’t go into every detail but there were two main takeaways from the consultation to note.

It’s juvenile arthritis, regardless of age

The first being that the Dr informed me how it was irrelevant what my disease evolved into (e.g. ankylosing spondylitis in my teens and psoriatic arthritis in my 20’s), my disease should always be referred to as ‘juvenile arthritis‘ as I was diagnosed before the age of 16. This didn’t really bother me but it did surprise me.

How did I get to 35 years of age without ever having that technicality explained to me? It explained why I saw so many different diagnoses used on my records but the JIA one kept reappearing.

He also educated me on something else about my disease when I mentioned how I seem to get more complications, strings to the disease’ bow as I get older (it was a throwaway comment which I presumed was common in arthritis with age). He explained how they typically expect to see “evolution” of the disease in people with juvenile arthritis until their “mid-forties and then it tends to stop”, leaving you to deal with what had presented up until that point.

Now, I knew he meant to give me this information as a positive – i.e. I’m well passed halfway in that journey. However, at the time, all I could think of is how I have potentially another ten years of worry about what else is going to crop up or go wrong.

This changes everything

Next, comes the real sucker punch. After a physical examination and look at recent test results, what the Dr told me next hit me like an 18 stone forward on the rugby pitch that I didn’t see running at me on my blindside.

He told me that he couldn’t find any signs of active disease. My tests were good, inflammation markers minimal, a load of biologic in my system, no antibodies suggesting a resistance to the treatment and nothing he could find on physical examination. He also said that how my skin had cleared up “beautifully” was also a good indicator of no active disease.

He had a point. I haven’t had any real rashes in a couple of months, toenails had stopped pitting and falling off since Humira was re-introduced at the end of 2019 and any lumps and red-coloured joints had eased over the last couple of months – but why am I still in so much pain!?

The Dr said that he would arrange some scans on my hands and feet as a safety measure but that he was confident that my arthritis was well-controlled now. Obviously picking up on the confusion and shock in my face, he hurried to explain the next part of his theory.

“A pain problem”

He explained that if active disease was present on scans, then it’s good news (never heard a rheumatologist say that before!). We move to a new biologic and it’s most likely an “easy fix”. He later went on to say he was “hoping it was active”, given the alternative. Which made me feel uneasy.

However, if there is no sign of disease on the scans then I have a “pain problem”. He explained that through a mixture of years of damage and from being in pain for so long (January 2019 with this current flare) my brain/central nervous system can “still fire off pain signals to areas where the disease was active or damage is done”.

So although the arthritis is now controlled, I am left in exactly the same pain in those areas. A bit like an amputee who still feels pain in their missing limb.

I had a brief moment of panic. I felt a combination of fraudulence, am I just imagining this horrific pain? and fear, so how the hell do we fix it then?

The doctor, again reading my concern, jumped in to say if that was the case, then it would be for pain management, my GP, pain psychology and a lot of support to help me “learn to live” with the chronic pain.

I recall the doctor being really sympathetic, giving me time to process and asking me to take my time whilst I think of questions. But to be honest, what happened between that point and driving home, I can’t really remember. I was in a daze.

Reflecting on what could be the new norm

Now, I’ve seen enough documentaries and read enough books about my heroes from music and sport to know what can happen to those in pain most of their life. The dependency on painkillers, the depression, relationship strains or worse. I know it’s a miserable existence, not just from what I’ve read but what I’ve experienced these last six months or so.

This was all I could think of for the first day or two after that news – that and the fact that I had waited 3 months to get access to Pain Management only for everything to be cancelled at the start of the pandemic. If they were the service that was to support me through this, how on earth do I get back on their radar on what’s sure to be an even bigger waiting list now!?

I also spent days wondering how I got to a position where I was hoping to find a warzone on my scans as a preferred alternative to nothing, and a life of pain with no end in sight.

I went quiet for a couple of weeks, withdrew into my immediate family to process the news. On top of the lockdown and shielding situation, this felt like another blow in a period of time that seems to be determined to find my breaking point.

Finding a way through

I took some time and took the opportunity to get outside, now that the Government had lifted some of the restrictions on the shielded. I didn’t feel any safer, the risk was still there, but I needed to move. To see outside these four walls for the sake of my mental health. This gave me much needed thinking time but it also had another, unforeseen benefit.

The first walk hurt, an awful lot. After all, I hadn’t really moved over the best part of 2-3 months. I knew that it was this lack of mobility that had reduced me to the use of a cane. The next day hurt much more but strangely, I was happy. For I was in pain because I had done something rather than in pain when I had achieved nothing.

Over the last week, I have slowly increased my activity, walking further and more regularly each day. You will hear me talk about ‘breaking the cycle’ a lot on this site. Where I make efforts to stop the spiralling pattern arthritis can cause: pain = reduction of movement = weight gain = greater issues with your disease and therefore more pain. However, in order for me to break the cycle, I have to be in the right headspace.

The last six months have broken me but weirdly, this news seems to have been the kick up the backside I needed. It’s taken far too long but I am finally fighting with intent again.

Regardless of what the future holds, whatever is or isn’t on those scans. I hope I can continue getting back to the positive ‘this is what you can do with arthritis’ Joel that I used to be. It’s been far too long since I was able to write something positive on this site.

Stay safe.

When a routine procedure becomes an emergency

My scariest 24hrs in a hospital

I have been in and out of hospitals for most of my life. It became the norm from an early age. However, an event in 2014 changed my outlook on how I approached routine medical procedures and to this day, I still have ‘white coat syndrome‘ whenever I enter a hospital.

It’s not unusual to be prodded by anyone

When you have arthritis from the age of 10 or 11 years old, you learn two things quickly. One, testing of anything and everything is a part of everyday life and two, no test or appointment ends with just a result or diagnosis.

When I was young, I used to dread going to hospital appointments. Not because of pain, being paraded in front of an army of student doctors like a lab rat or fear of all the poking and prodding. But because it never stopped at ‘just a check-up’ or consultation. The number of appointments that ended with me being admitted to a ward that same day, was surreal. To the point I started taking a night bag with me to the hospital. Whether it be to monitor me, trial a new drug and keep an eye on side-effects or to save my parents a number of trips to the hospital. I never seemed to be able to just walk out after an appointment.

Until my 20’s, any fear or phobias I had regarding hospitals was purely that, the fear of not coming home yet again.

Cause and effect

Those with autoimmune disease will know, it’s never a clean fight in our struggle. It’s a series of battles within the war. The playing field is never level and as soon as you think you’re on top of one symptom, another one emerges.

2014 was a low point for me with my health, possibly more so than the nightmare scenario that played out in 2019. I was in my late 20’s, I had been diagnosed with psoriatic arthritis a few years prior and was still adjusting to something else being added to my complex list of health challenges. I was back on methotrexate for the first time since I was a teenager but my condition was far from controlled. I was needing to occasionally use walking aids again. I was piling on the weight, in a lot of pain and depressed. To make matters worse, the methotrexate wasn’t just simply not working this time around, it was physically harming me too.

Anyone who is familiar will know that methotrexate is potent stuff. It is a form of immunosuppressive chemotherapy which means it can damage healthy tissue and normal bodily processes as well as the overactive immune system cells you are targeting (note, I am not a doctor or medically trained). When I was taking it at 14-16 years of age, I used to have weekly blood tests. I no longer feel anything when blood is drawn from my median cubital veins, given the sheer number of needles in my arm. As an adult, it’s once a month. This is primarily to check it’s not damaging my liver.

I tolerated methotrexate well as a teenager, however, in my 20’s that wasn’t the case. I would vomit every morning before work and be doubled up with stomach cramps but such is life with autoimmune conditions. You come to accept the unwelcome side effects as the ‘greater good’ given what state your body would be in if left untreated. However, I admit, at times it’s difficult to tell what’s caused by the disease and what is a result of the treatment.

‘The liver of an alcoholic’

I’ve had some pretty rotten experiences on medication so when I felt rather unwell, I didn’t think much of it. After all, I juggle a lot with aches, pains and related issues as a result of years of damage. But when I got the ‘withheld number’ call the day after a blood test, I knew something was up.

I was told that my ALT result was ‘slightly elevated’ and that I needed to have another test. ALT, or Alanine Aminotransferase, is a test regularly used to monitor your liver on certain medications. ALT is an enzyme produced by cells in the liver and a high number can be an indicator of inflammation or damage in the organ.

Don’t quote me on the numbers but I recall the first couple of tests being in the 60-70 range (normal is approximately 25-35 units per litre, depending on who’s assessing it). A few weeks later, it was in the 100’s. Methotrexate was stopped and I was referred to hepatology. The numbers fell when the drug was removed but they stayed high, varying between 70-150.

I had lots of follow up tests and scans carried out and strangely the damage to my liver persisted, long after methotrexate was withdrawn. I recall being rather deflated after an ultrasound when the specialist told me that I had a ‘fatty liver’. I wasn’t completely surprised as I had gained weight whilst being immobile but at my heaviest, I was 14.5 stone. Although overweight, it didn’t seem dangerously heavy enough to be causing such an impact on my liver.

At one point, I was also told that there was some damage but no scarring that couldn’t be reversed (the liver is an incredible organ and capable of repairing itself to some extent). I’ll never forget when the doctor described it as looking similar to someone who was in the early stages of alcoholism. That was a real wake up call for me.

I have always been super healthy on methotrexate. I know it’s a treatment that has to be taken seriously so whenever I am taking it, I don’t touch a drop of alcohol and try and watch what I eat. So to hear that was a little frightening.

The memories fade but the scars remain

As a precaution, it was suggested that I have a liver biopsy. Just to confirm that the cause was, in fact, that of a combination of drug and immune response as opposed to anything untoward.

They explained the routine procedure – a local anaesthetic would be applied. Then using ultrasound to guide a large needle between two of my ribs, a piece of my liver would be removed for testing. It sounds just as invasive as it felt, I assure you. I wasn’t looking forward to it but knowing how often something is attributed to your chronic health condition, I was pleased that they were covering all bases.

The procedure was horrible. As simple as that.

I’m used to that sensation of being stung by multiple wasps that local anaesthetic gives you. Although it felt more uncomfortable on my ribs. What I wasn’t prepared for was that once the needle broke the skin, I felt everything! It’s a hard feeling to describe. Like a burning pressure deep within your abdomen. Similar to what I experienced with lumbar punctures except for this time, there was much more pain accompanying that feeling of pressure. In fact, the best way I can describe is just as it was – like I was being stabbed.

Looking back, I felt for the poor radiographer and nurse assisting him. Clearly they were not used to seeing somebody in that much discomfort. I remember the nurse saying ‘it shouldn’t hurt you this much’ with a tinge of panic in her voice. I would say I was writhing around in pain but at the time, I was acutely aware of the very long needle deep inside me. It must have been distressing for them too.

We’ll never know what went wrong there or why it hurt so much. I remember being given the option of more anaesthetic but I informed the radiographer, as politely as I could given the circumstances, to get the procedure over with now that the needle was already in.

The next part I remember feeling like it was happening in slow motion and a quick blur at both the same time.

Is anyone trained to insert a line!?

Laying in a sweat-soaked bed, I was wheeled out of the ultrasound room where the procedure took place and put in a bay with one or two others who were waiting to go in for routine scans. I had been warned beforehand that it was standard practice for me to be observed for an hour or two before my partner could collect me. Apart from the unpleasent experience, I felt fine. I was relieved it was over.

I was placed on my right-hand side, the side the needle entered and told not to move. The forms I had to fill in beforehand outlined that a small amount of bleeding was expected. A nurse came to take my blood pressure (BP) and a few observations and asked me how I was feeling. I explained it wasn’t the most pleasant of experiences but I felt fine now. She said they wouldn’t keep me long.

The third or fourth time the nurse took my BP, she again asked how I was feeling but this time more quizzically like I wasn’t giving her the right answer. I remember feeling thirsty but I still felt ok. She told me my BP was a little low and she was going to come back with someone. A few moments later she returned with a more senior nurse and explained that my BP was falling and it was causing concern. I again said I was fine, a little surprised by her comment and then no sooner had I reassured them, it hit me.

I suddenly felt faint. Clammy. I had started sweating again and felt tired. A few moments later I remember the initial nurse gently shaking me, asking me to not go to sleep. ‘I’m fine, just a bit tired‘ I replied, closing my eyes. The next time I opened them, all hell had broken loose.

All hands to the pump

I recall hearing the nurse say ‘it’s still dropping‘, ‘it will be a bleed‘ the more senior nurse replied, ‘get a doctor‘ – ‘is anyone here trained to insert a line!?’. By this point, I recall seeing the concern on the other patient’s faces, soon after, my cubicle curtains were closed.

There was some panic over where the nearest doctor was and a third nurse had taken over. I remember her wearing a dark blue uniform, so presumably a Sister. I also remember her terrifying me with her stern manner whenever I closed my eyes.

It was around this point that I asked the first nurse if she could tell my fiance that I loved her. I still don’t know if I fully thought I was going to die but I do remember feeling like it was the closest I had ever come to it. I wasn’t in pain and apart from feeling faint and sweaty, I wasn’t in any real discomfort. I just remember having this overwhelming urge to drift off to sleep. That, combined with the expressions on the medical professional’s faces, I guess made me feel like it was an appropriate thing to say at that moment.

As for what happened next, I can only tell you the snapshots I recall. A rather nervous doctor trying to get a cannula in. I remember waking at one point to him saying to his colleague how he hadn’t done one since his training. I chose to not fight the urge to sleep at that point. I woke again to a porter rushing me down a corridor and the Sister explaining that ultrasound wasn’t equipped for my ‘situation’ and that I was being taken to a ward.

I can’t remember getting on the ward but I remember coming round in a private space that was being used as a storeroom. After all, they weren’t expecting me! A few hours and a lot of fluids later, I felt lucid enough to reach to my belongings and send Anita a text to come and find me at the hospital (I had no idea what ward I was on) as something had happened but that I was ok. Apparently staff had tried to call my next of kin but had called my deceased grandmother’s number. The forms I filled in prior to the procedure in the gastro dept. hadn’t reached the ultrasound team.

My wife (fiance at the time) took his photo in the hours after the procedure

After the dust had settled

Unsurprisingly, it turned out that I had a bleed on my liver. Sometimes a vein gets nicked during the procedure and causes a lot more bleeding than expected. A couple of days in the hospital and a lot of fluids pushed into me and I was fine. No surgery needed.

I don’t remember being overly scared at the time. It was more after the event that it shocked me. Once I was back home I realised how serious it could have been.

In the years since that event, I have had lumbar punctures and a test where needles are inserted into various parts of your skin (hands, thighs, feet etc.) and small electrical shocks are administered to test the muscle response. Both times, I am not ashamed to say that I requested my wife present to hold her hand. Both times I sweated buckets due to stress and my body going into mild shock.

I can still have a blood test and watch the whole thing, that doesn’t bother me. However, that day, that liver biopsy, changed me. I now no longer see any procedure or surgery as routine. I experienced first hand how something minor can become life-threatening. How quickly things can change.

My future and hospital tests and routine procedures are forever intertwined. I can’t escape that. It’s the hand I have been dealt with. What I must do, is find a way to manage my fear, to regain a healthy relationship with the treatment of my conditions again. One thing is for certain, however, I will never lay on a hospital bed before telling my wife I love her again.

Pain and Parenting; when the happiest year of your life becomes the hardest

In January 2019 I was told, like many others, I would be moving to a biosimilar version of my biologic. What followed almost immediately afterwards was one of the biggest flares and backward steps in the management of my condition. Pain and parenting was a combination that almost broke me.

Note: this article first appeared on Undercover Superhero’s Blog as a guest post as part of their ‘Reality of’ series in January 2020.

The second re-write was published in NASS’ Spring 2020 magazine in April.

This is an updated version of those two articles for readers of JoelvsArthritis.

The background

It wasn’t just the intense pain, huge increase in absence from work or the realisation of how woefully unprepared and ill-equipped I now was for dealing with my disability after years of being in remission that made 2019 so desperately upsetting. It was because after two years of trying (and many more of reassurance about the limited risk of passing on my diseases), my wife and I had our first child on 13 January 2019. A beautiful boy named Dylan. With the flare in full flow by February, I was suddenly petrified of the future.

Anyone who’s had children knows it’s flaming hard. Those first few weeks and months turn your world upside down. I’d challenge anyone to not have a fleeting, guilt-ridden thought at 3am on your fifth night feed, when you’ve got to be up in two hours for work, that you might have made a terrible mistake. I was having these thoughts. I was more sleep deprived than I’ve ever been in my life. My wife and I were bickering as any couple does as you try and maneuver your way through this crazy situation of being responsible for a whole new life that didn’t come with a manual. At the same time my pain levels were increasing at a frightening rate.

After two years of playing rugby and running half marathons, my arthritis was back.

2018 – On my original biologic, I hadn’t let arthritis stop me

I felt like I was losing everything

I could see joints starting to swell, plaques appear on my body. I was having to plan when to take painkillers so I wasn’t completely useless to my poor wife. Sadly, I was also no longer able to be physically active and with the majority of my hobbies being sporting endeavours, I suddenly lost touch with my friends and social circles. The most upsetting thing of all was that even when there was an opportunity to sleep, I couldn’t because of my worries of what I might and might not be able to do with Dylan in the future. All of this came out of nowhere at the worst possible time.

I had nightmares of dropping him or falling down the stairs whilst carrying him that often ended with me waking, jumping out of bed, screaming or even convinced that I had dropped him on the bedroom floor. My wife would find me looking for him for a few seconds until I came around. The whole time, he’d be sleeping soundly in his crib. Worst of all was the thoughts of my wife leaving me because I couldn’t pull my weight. I didn’t want to become another person that she had to look after.

Writing this down and reading it back for the first time felt horrific. But I was just a man going through a life changing event at the same time as being in an awful lot of chronic pain. With uncertainly about my future health and unable to do the things I enjoyed anymore. I should have sought help earlier but I was spinning so many plates at the time, I didn’t know where the flare ended and poor mental health began. Or what was just part of being a new parent.

The recovery

My turning point came in the summer. I wasn’t adjusting to my change in health and circumstances. My appeal to have the biologics decision reversed had failed. I was clearly depressed, isolated, angry. I had piled on weight, lost my muscle definition and the best word I could use to describe me then was simply ‘flat’. The confident, chatty Joel had gone and I was focussing far too much on the issues rather than all the good that I had going on in front of me. Primarily, my beautiful family.

After one particularly bad night of nightmares and dark conversation about how useless I was, my wife asked me to get medical help.

It wasn’t until I was sitting with the GP and talking through what had been happening that I truly realised how bad I had let the situation get. I still remember now how I got goosebumps listening to myself vocalise my inner thoughts. I couldn’t believe how self-deprecating I had become. How I’d let my poor health allow me to have such a low opinion of myself. I felt like I was failing as a father.

The GP was very good at reminding me that I faced a unique combination of events. It allowed me to look at my situation from the outside in and was like a huge weight being taken off of my chest. We talked through my options and I expressed a personal preference to avoid antidepressant medication after a previous bad experience. We therefore settled on a plan involving some painkillers to help me sleep, a break from work, and a promise that I would get out of the house. To do more for myself and find something to focus on. Something to put my energy into.

The message

At the time, I thought I was the only one in this situation. That it was a bad roll of the dice. Terrible luck and that no good could come from it.

It took six months but once mentally healthy again, I reflected on what had happened. I started to think about previous flares. How pain and an element of depression or low mood went hand in hand. When I looked back, it’s was the emotional or upsetting element of the flare that I remember. What disadvantaged or deprived me. Not the pain. Yet at the time, in the moment, it’s all about the pain.

You complain about the pain to others or skulk around the house trying not to draw attention to your pain. You plan your day around the pain and when the painkillers might be most effective. When not in pain, you worry about the pain returning. It’s all consuming yet upon reflection it’s completely futile. By focussing on the pain, I realised that I was letting it in. Letting it define me and steal from me the opportunity of making memories with loved ones. Memories that will long outlive any recollections of the pain itself.

Learning to be kind on myself

Thinking about my situation as a new dad, I realised I had been going about it all wrong. Parenting alone is tough. I, however, was dealing with chronic pain and parenting. I needed to go easier on myself.

Yes, there will be challenges and some things that I simply cannot do. But rather than worry about what I might not be able to do in the future, I should be focussing on doing things that distract me from the pain. I’m learning to love what I can do and not be upset by what I can’t. As a parent, contribute where I can and not be discouraged where I am unable.

Learning to enjoy the simpler things in life

The future still scares me but I can either spend my time and Dylan’s precious early years worrying about whether I’m going to be able to play football with him. Or, I could enjoy every moment now. The first steps, first words and the first ‘I love you daddy’. They are things no amount of pain or disability can take away from me.

With my new positive attitude, I successfully re-appealed my treatment plan and had the decision reversed in November 2019. Eleven months after my world was unnecessarily turned upside down. At the same time, I created this blog to teach myself to talk about my challenges. To accept me, myself and to help others. For now, I have replaced sport with writing and I hope it leaves a mark with time that makes Dylan proud of me.

Pain and parenting was a difficult experience but one that made me stronger. I am optimistic about my future and confident in my ability as a parent living with a disability.

I don’t have nightmares about dropping the baby anymore.

Biologics users – why we’re at risk from Coronavirus

Back at the start of February, I wrote an article about why I was worried about the pandemic-potential of the Coronavirus as one of many biologics users. Biologics and Coronavirus, or any respiratory virus doing the rounds, can be a lethal combination.



Coronavirus – The worst time to be right

Unfortunately, those fears went on to be justified and Covid-19, as it’s now being labelled, has changed the world as we know it. Almost 30% of the world are under some form of lockdown (Buchholz, 2020), financial markets are spiralling and governments are taking unprecedented measures to limit the spread, protect their health services and support their people.

We are at war against a biological threat and this is the most restricted many have been with regards to their civil liberties in generations.

Since writing my first article on this subject, my site has seen a big upturn in visitors, particularly first time visitors, searching for more information on the risks and relationship between biologics and coronavirus. Firstly, welcome and I hope you find my articles useful. Secondly, it made me realise that there was limited information on this subject. Or at least, a lot of people searching for said information at this time.

It should be noted that I am no expert. I’m not even medically trained. But I do have a lot of information and built up knowledge on biologics over the years as a user and advocate for my own health.

What are biologics?

Biologic treatments work by disrupting signals to the cells that make up your immune system (Kiefer, 2014). If you are being treated with biologics or biosimilars (both referred to as biologics for the rest of the article) for arthritis, Crohn’s and other autoimmune conditions, then you are immunosuppressed. Your immune system is compromised as a way of controlling your natural response that causes damage in the body.

I explain my arthritis to people as my body having an overactive immune system. It gets bored and picks fights in my joints, skin, eyes etc. and depending on where the self-inflicted attack is, is what it’s called. Arthritis, psoriasis or uveitis in the examples above.

Biologic therapy alert card (front)
Front of card
Biologic therapy alert card (back)
Back of card

Biologics manufacturers and your medical team make the risks of biologics very clear to you at the outset. You must carry an alert card that explains how prone to infection you are (above) and have regular monitoring blood tests to ensure it’s not damaging your immune system too much. Biologic therapy makes you prone to pneumonia, chest infections and other upper respiratory infections. Anyone who’s been on biologics for more than a few months, will soon realise this. You are advised not to drink, to stay healthy and at a healthy weight. You must also have the flu jab.

These are serious medication but they are also life changing ones.

What’s so dangerous about biologics and coronavirus?

There are three parts to this. although a medical professional may be able to provide more.

Firstly, as mentioned, if treated by biologics you are immunosuppressed (referred to by some as immunocompromised). This means that we don’t have a strong line of defence in the first place. In order to manage an overactive immune system, you essentially dampen it down. An example of this would be that my wife might get a cough or sore throat for a week. On biologics, I will get the same but it might last weeks and turn into a two-week long chest infection after that. Often a simple common cold will linger with me for many weeks as my body adjusts to fight it.

Secondly, as with steroids, biologics can mask common symptoms of infection such as fever (as highlighted on the alert card). This can put you at risk of seeking medical help when it’s too late. For this reason, biologics users are encouraged to speak to their doctor at the first sign of infection.

Finally, and the biggest factor with regards to biologics and coronavirus – the fact that you are prone to upper respiratory infections. Covid-19 attacks the lungs and respiratory tract – the exact same place biologics makes you vulnerable. It’s why my ears pricked up back in January the first time I heard about this virus and it’s potential. And probably why I’ve had so much eye-rolling and claims of being over dramatic since writing about this subject. Unfortunately for us all, the majority has woken up to the very real and present danger Coronavirus now poses to us all.

An added complication

There’s one final complication for those immunosuppressed on biologics during this time. The general medical practice for biologics (at least here in the UK, may vary country to country) is to stop treatment at the first sign of infection. So if I get a temperature or productive cough, I skip my next injection until I feel well again. This allows the immune system to recover and fight off any infection. It also removes the risk of compromising the immune system further when you have a potentially dangerous infection.

The issue with this is that it has been widely reported that the way in which Covid-19 kills, is via a massive immune response that damages and eventually shuts down organs (Lee, 2020). This is due to your immune system essentially panicking with a foe it’s not encountered before. In some minority cases, the body’s defences can overreact and damage beyond repair the host’s body, way beyond that of the lungs.

Therefore, biologics users are facing a big unknown at this point. It has been suggested that stopping biologics as you normally would at first sign of infection, could contribute to this heightened immune response in those with autoimmune conditions. Although there are no formal studies out yet to support this. It seems to be a theory doing the rounds and certainly one I have had mentioned to me a few times by medical professionals. There are also studies taking place in Asia that suggest biologics can be used to help fight the infection in the critically ill. Again, we await papers to be released.

Unfortunately, this is a rapidly moving situation and sadly, many more will suffer before we have the appropriate level of data to draw a conclusion.

How can I help?

If you would like more information on this subject or would like to help, there are two primary registries running at the moment to gather data. These aim to collect the data on infection for those with autoimmune conditions in order to build a picture on how Covid-19 impacts those patients.

The European Patient Registry is a self-registering study that: “Anyone with a rheumatological, autoimmune or autoinflammatory disease is invited to take part“. It takes two minutes to sign up and each week you will be emailed a quick survey to fill out on any symptoms you may have. I would strongly encourage you to get involved in this to help others in the future in our position.

The Global Rheumatology Alliance have also set up a registry for care providers to register cases. The early figures from a limited data set in the tweet above, look positive.

Are you on biologics? How do you feel at this time about coronavirus? Let us know in the comments.

References

Buchholz, K. (2020). Infographic: What Share of the World Population Is Already on COVID-19 Lockdown? [online] Statista Infographics. Available at: https://www.statista.com/chart/21240/enforced-covid-19-lockdowns-by-people-affected-per-country/ [Accessed 31 Mar. 2020].

Jarproject.org. (2020). Juvenile Arthritis Research – COVID-19. [online] Available at: https://www.jarproject.org/covid [Accessed 1 Apr. 2020].

Kiefer, D. (2014). Understanding Biologic Treatments for Rheumatoid Arthritis. [online] Healthline. Available at: https://www.healthline.com/health/rheumatoid-arthritis/understanding-biologic-treatments-for-ra#1 [Accessed 31 Mar. 2020].

Lee, B.Y. (2020). How Does The COVID-19 Coronavirus Kill? What Happens When You Get Infected. Forbes. [online] 22 Mar. Available at: https://www.forbes.com/sites/brucelee/2020/03/21/how-does-the-covid-19-coronavirus-kill-what-happens-when-you-get-infected/#3d6bc5ba6146 [Accessed 1 Apr. 2020].

The COVID-19 Global Rheumatology Registry Team (2020). The COVID-19 Global Rheumatology Alliance | The Global Rheumatology Community’s response to the worldwide COVID-19 Pandemic. [online] Rheum-covid.org. Available at: https://rheum-covid.org/ [Accessed 1 Apr. 2020].