Your stories: Ashleigh’s Juvenile Arthritis diagnosis story

In the latest of our ‘Your Stories’ feature, Ashleigh Clarke shares her Juvenile Arthritis diagnosis journey and talks about the challenges many don’t see, including when treatments don’t work and overcoming needle phobia.

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I was first diagnosed when I was 8 years old. I had noticed that my left knee was swollen. It didn’t improve after keeping an eye on it for a while, so my mum took me to the GP, who sent me for blood tests and an x-ray of my knee. When these results came back, she diagnosed me as having arthritis.

I was referred to my local hospital who didn’t have a paediatric rheumatologist, and I was only the second child the clinic had ever had. I had to sit in adult clinics normally surrounded by retired people who got confused as to why a child was there. My first consultant was lovely but had no idea how to deal with children with arthritis. So, I ended up under dual care with Great Ormand Street Hospital. Every three months, me and mum would get on the train and head to London for a full day of appointments at GOSH. I would see the ophthalmologist, rheumatologist and physio whilst I was there. I remember them telling me that there was a chance I could get better and go into remission, but unfortunately, that didn’t happen for me. My arthritis started to progress quite quickly and spread to more and more joints. I quite enjoyed my trips to London. We would normally try and do a bit of sightseeing at the same time, so it wasn’t just all hospital-based.

Once I got to about 12 I needed to start on some stronger medication which meant monthly blood tests. Unfortunately, I had been pinned down on several occasions to have bloods, so I refused to have blood tests done; this greatly reduced the medication options I could have. GOSH wanted to start me on Methotrexate, so I had to get over my blood test/needle phobia. I was referred to the most amazing play specialist and child psychologist who helped me get over this needle phobia. I was on methotrexate for years, with the dose slowly increasing more and more. As the dose increased, this also meant the side effects increased. These got to the point that I couldn’t cope anymore, so my medication was changed. I then went onto injections at home! My mum had to be trained to give me sub-cut injections at home. She hated doing them, and I hated having them. But they did help.

By the time I had reached 16, the injections had stopped working, so now I was going onto infusions. Every 8 weeks, I would head to the hospital and spend a few hours sitting in a comfy chair having an infusion. I much preferred these to the injections at home! Luckily the infusions helped. I ended up trying all of the infusions on offer over the course of 10years. But again, these stopped working, and I was running out of options.

Luckily some arthritis medications you can go back onto after a break, some you can’t. So, I was restarted on the home injections. I wasn’t happy, but I didn’t really have much choice. It had been a long time since I had been on home injections, and they now came as auto-injector pens. I hated them! They injected at such a high pressure I found the injections painful. I had to get someone else to do them for me, and I just couldn’t bring myself to inflict that pain on me. But unfortunately, they didn’t work for me the second time around. Luckily a new range of medications was now available; these were JAK inhibitors. A whole new group of medications to try. Unfortunately, these didn’t work either. I am currently on Upadacitinib. This is the last medication I have not tried before.

In my 20+ years with JIA, I have been on every tablet, injection and infusion available to me, but nothing is controlling my JIA as much as I would like. I know no drug will ever make me feel ‘normal’, but not having to experience daily pain would be amazing. It’s a simple thing that other people take for granted.

My Covid19 vaccine experience

There were times over the last 10 months or so that felt like this day would never come.

My experience since March 2020 has been well documented. Since February, I’ve been in one shop with the only other times I have stepped foot in a building being to see a Dr, have a blood test or some other treatment – all with heightened levels of fear and anxiety.

Even when the successful vaccines started making the news, I didn’t allow myself to hope. Over the last year, I’ve only been left depressed and disappointed holding onto such positive thoughts. So when a work colleague contacted me over the weekend to say that our NHS Trust had decided to make the vaccine available to all staff, including corporate/non-clinical, the field in which I work, I was delighted.

The largest vaccination programme in British history

For background, the UK Government has pledged to vaccinate all adults in the UK by Autumn 2021; a target helped massively by the approval of the ‘in house’ developed Oxford/AstraZeneca vaccine. As part of their rollout, a priority group list was drawn up with people like myself and many others with chronic illnesses and autoimmune diseases requiring the treatment of immuno-suppression and steroids, falling into Priority Group 4, which began contacting people for vaccination from 18th January 2021.

Source: COVID-19 vaccination first phase priority groups – GOV.UK (www.gov.uk)

I was lucky to essentially fall into Priority Group 2 as an NHS employee.

A surreal experience

After speaking with my colleague, I checked my work email, and to my amazement, there were appointment slots to book for the same day at my local hospital! In a surreal haze, I grabbed a 20:50hrs appointment and dug out my NHS ID badge, which I haven’t seen in months due to the working from home arrangements in place.

Somewhere between being informed I was eligible, getting a same-day slot and reading the information on the hospital’s website for all the do’s and don’ts I needed to be aware of ahead of my visit, a shadow of doubt started to creep in. Around an hour later, I had completely convinced myself that I would be turned away, given the uncertainty, misinformation and outright conspiracy theories you would have no doubt seen circulating about the virus online – usually from sources of no credibility whatsoever.

I was particularly aware of there being a preference for the Pfizer vaccine for the immuno-suppressed; something around the Oxford vaccine being manufactured differently. I couldn’t even remember where I heard this – doesn’t matter in today’s world of fake news, it was a seed of doubt and it had started to take root.

I promised myself not to Google anything. I would answer any questions they had, be completely honest, and if I got the vaccine, great, if they turned me away, I was in no worse position than I started the day.

As the light faded and my appointment grew closer, I was a fidgety bag of nerves. I wanted this so badly. It felt so close.

Unexpectedly calm

I was overwhelmed by the organisation at the hospital. I’ve always been fascinated by systems and processes. Still, given the vast pressures that this place was under – experiencing a situation that it has never faced before – I was completely taken aback at how smoothly the whole operation ran.

First, clear signposting for the vaccination centre, a converted day procedure unit, complete with free parking and an obvious one-way system. Then, the biggest surprise, the quiet. I don’t know what I expected really, long queues? A ticket system? Military helicopters crisscrossing overhead, drowning out a tannoy system as you see in the movies? I jest, of course, but I certainly didn’t expect the silence, the lack of people, the lack of any sign of crisis. It made me feel proud to work for such an institution.

I made my way from the designated car park up a tunnelled corridor. The first person I saw was a security guard who greeted me. ‘Do you have an appointment?‘. Upon answering ‘Yes‘, I was given a form to complete using my own pen that I had been asked to bring with me. By now, two other people had joined me in completing the paperwork. Where is everyone? I again asked myself.

Upon completing the paperwork and showing my NHS ID badge, I was directed to a nurse who took my temperature. Then to another nurse who ushered me straight into the vaccination room. ‘Take a seat on one of these chairs and the next available station will call you up‘ I was told. There were approximately 6-8 ‘stations’, each with a doctor/pharmacist and a nurse, a trolley full of equipment and someone being vaccinated. Then there was me. No queue, no drama, just a gentle buzz of conversation, bright lights and eyes smiling in place of masked mouths.

Within a minute, I was called to station and asked to remove my coat.



Emotionally overwhelmed

The doctor introduced herself and started going through the questions on the sheet of paper I handed to her, starting with asking me to confirm my name and birth date. At this point, I realised I hadn’t even read what was on this double-sided piece of paper; it happened so fast. In my haze, I had filled in the boxes I was instructed to and moved on.

Some questions were asked about allergies, so I mentioned my one of cashew nuts, then if I was on any blood thinners or had any infections recently. I was then told I would be getting the Pfizer vaccine. At this point, there had been no mention of my medical background, my history, my medications. Perhaps it was looked at in advance but to be safe; I mentioned that I was on biologics by casually saying ‘I’m glad it’s the Pfizer one, someone said to be careful on Biologics with the Oxford one.’. ‘I’m not aware of that‘ she sternly replied and then asked me for specifics and what Biologic I was on.

‘No evidence’ of a preferred vaccine for the immunosuppressed

By the end of the conversation, I was completely reassured that the information I had was unfounded and their only concern with the immunosuppressed at the moment is the efficacy of the vaccine, as there simply hadn’t been enough people in my position vaccinated long enough to see if we get the same level of protection as the general public. With that dealt with, we moved onto the vaccine, much to my delight.

I offered my non-dominant left arm and was warned about side effects compared to the usual annual flu jab. I was told that there have been a number of reports that the injected arm aches more than usual, headaches afterwards are common and generally feeling a little under the weather for a couple of days. I acknowledged and was promptly vaccinated!

The first thing I noticed was the instant arm ache, as opposed to the flu jab, which tends to present hours later. Within seconds, this tracked up my left-hand side into my neck, and I had an uncomfortable (but bearable), neck and shoulder pain similar to a pulled muscle – all whilst the doctor was still holding a pad over my injection site. I didn’t feel the need to mention it, but it was unpleasant, so worth mentioning in this piece to allay anyone else’s fears, should they have a similar experience.

A few seconds later, I was given the important guidance of how I am not fully protected until 7-10 days after my second jab and need to practice social distancing etc. still and was directed to a waiting area where we were asked to stay for 15 minutes should anyone have an allergic reaction and suchlike.

Due to my excitement, 15 minutes went by in a flash, and I thanked the security guard as I walked proudly into the crisp night air, carrying the weight of my gratitude to be one of the lucky few to have some level of protection against this awful virus. As I drove away from the hospital, my eyes welled with tears – finally, a small glimmer of hope had been turned back on in my world.

Upon reflection

Apart from a headache later that evening, that was it. No issues, no other side effects apart from a dull ache in the muscle the day after. I could have easily taken paracetamol to help the headache that evening, but I wanted to experience the vaccination unfiltered to benefit this article. I even have my second vaccine booked in for the end of March – that’s something the media are not talking about.

From today, I have hope again. From today, I can see a future. A future of beers with friends, holding birthday parties for my son, going on holiday, watching live music and days spent at the beach. I also see a future of paying respects at funerals of lost loved ones, having physical contact for friends and family support through the tough times and the inevitable economic downturn that is to come.

As you see, this colossus effort to vaccinate an entire country in a few months, a national effort not seen since World War 2, means absolutely nothing if we do not learn. The next pandemic-potential virus is probably already circulating, perhaps in an animal or already in the human population. This vaccine won’t protect you – we will have to go through all this again if we do not learn.

The signs have been there for years – it took getting Swine Flu in 2008 and being horrifically ill where no doctor would come to the house for me to see the potential of a pandemic personally. But not enough people were impacted, so everyone turned a blind eye.

Worryingly, as I sit here typing this on the 18th January 2021, where 94 MILLION people have been infected worldwide (that we know of) and 90,000 confirmed deaths in the UK alone, I fear we still haven’t had enough people see the reality of this horrible situation with their own eyes to learn, to change; like those in the NHS or who have lost loved ones have suffered through, and it will be at the detriment of us all when this happens again – and it will happen again.

As the UK becomes the first country to vaccinate against Covid-19, a look back at my coverage of a historic year

On Wednesday 8th December 2020, the UK became the first country in the world to vaccinate against Covid-19 virus; which has impacted our lives in ways we could have never imagined.

I wrote a lot about my experience, starting with concerns before the pandemic, my shielding experience and how it has impacted me post-shielding. So now seems like an appropriate time to review those articles and compile for easy reference, in case you missed any of them. Enjoy!

N.B. the ‘read’ count I am providing is based purely what was read on joelvsarthritis.co.uk – I cannot account for shares on other platforms, for example, we have evidence to suggest that https://joelvsarthritis.co.uk/as-shielding-comes-to-an-end/ could have been read up to 10,000 times on other platforms! Read count accurate at the time of publishing.

1. Early concerns (221 reads)

I cannot believe I wrote this at the end of January (published early February) – it feels so long ago! It also feels very frustrating to think of how many conversations I’ve had with followers, loved ones and work colleagues trying to persuade them about the real and obvious danger of this virus.

This piece kind of flew under the radar as nobody was talking about the virus back then, however, I had just recovered from a run of bad infections, I had experienced Swine Flu back in the 2000s and to me, this had the potential to be the ‘big one’ scientists had warned about but people stopped listening when previous pandemic-potential outbreaks (such as Swine Flu and Bird Flu) were successfully contained. Unfortunately, this ignorance helped fuel what was to come in 2020.

2. Controversies (46 reads)

Hardly read but my word did this get me some passionate (replace with aggressive) messages on social media! It still makes me chuckle how so many people could hold such strong opinions on something many of them hadn’t even read.

I wrote this when I was scared. I was receiving all the scientific info from the hospital. I knew shielding was coming, a national lockdown imminent but all the media were peddling was this narrative around how it wasn’t something to worry about as those who died already had ‘underlying health conditions’. It was wrong on multiple levels and, in my opinion, contributed to the wider public not taking this virus as seriously as they should.

What I didn’t expect was so many to not see the potential danger, the awful decision Doctors and Nurses would have to make if there was only one ventilator and two people needed it – one a fit young person who had been in a car accident, the other a disabled person with ‘underlying health conditions’.

3. The breaking point (67 reads)

I don’t need to pick at old wounds on this one. The article explains how I was feeling back then better than I could articulate now. From the end of March to April, I came pretty close to breaking point. It was important that I went on to write about this, capture that experience. I’ll leave it at that.

4. Shielding enforced for the ‘Clinical Extremely Vulnerable’ (52 reads)

The news I knew was coming since the end of February. It didn’t make it any more palatable, however. Further guidance came out in the following days to explain it wasn’t for all biologics users and this lack of clarity caused issues in the arthritis community throughout the pandemic.

5. As a national lockdown comes in, an opportunity presents (53 reads)

I wrote this at the start of the national lockdown, hoping to use the nation’s sense of lost freedom, liberties and things people take for granted to try and empathise with the daily lives of those with chronic illness or disability.

I’m not ashamed to say that I was gutted that this one never took off like later articles. However, I believe it was the start of my writing maturing – where I started to talk about far bigger subjects than just my personal battle, where I started to use the emotion I would inject into my songwriting in my younger days, into my writing for greater effect.

I’m really proud of this one, even if hardly anyone read it! 🙂

6. A predictable war (11 reads)

My first of many poems during lockdown (I won’t list them all). This one proved popular on social media so the read count doesn’t do it justice.

You can read them all here – including the very popular The Outcasts.

7. Educating on immunosuppressant therapies (297 reads)

I had received so many messages and questions about my earlier article on Coronavirus and campaigning on social media that I felt like a follow up was needed to answer the question of why biologics users were at risk.

This one still gets hits from Google searches today from people asking that question and recently crept into the ‘Top 5 Most Read’ articles on this website, so I’m glad I wrote it.

8. Isolation takes its toll (204 reads)

The first of my ‘big hitters’ in terms of shielding articles and the first one I saw really take off on the likes of Twitter. I know for a fact that this was re-published on other platforms without permission but it was an important message and I was pretty broken at the time so didn’t raise too many objections (in future – don’t steal my work without permission!). 🙂

This article also felt like the first one in which I fully found my voice – my confidence and writing style and I think much of my work looks like this piece today. Very proud of this one, even though I was a in a very dark place when I wrote it.

9. BBC interview and awareness campaign (44 reads)

A surreal couple of months that saw me involved with national Versus Arthritis radio campaigns and media work, culminated with a BBC Look East interview on my shielding experience and my thoughts of a national lockdown coming to an end.

It’s funny how you reflect on a period thinking you spent most of it in bed, doing little to contribute, being miserable etc. and then realise you achieved much more than you gave yourself credit for. Blogging has its uses! Maybe keep a diary of your ‘little wins’ to remind yourself when in those bad places on high pain days?

10. The long chronic illness road (235 reads)

After months of no access to treatments and my usual hospital care due to Covid-19, I finally got access to my consultant. I didn’t get the answers I wanted and the experience pushed me back towards that dark place I had been in back in March – but the love and support I got on social media from you lovely people was phenomenal. Thanks for picking me up when I fall.

11. Shielding end date announced – My experience goes viral (714 reads+)

What happened with this article is something I still can’t wrap my head around. I wanted to write a piece that summarised the last 5 months of shielding. My experience. I had no expectations but shortly after posting to my very small Twitter following at the time (<100!) it was retweeted by university professors, a BBC World News journalist and the rest was history!

To put it into context, I was seeing my own article on my social media feed from people I didn’t know or follow. I clearly captured some of what the shielding community were feeling.

Upon seeing this take off, I quickly put in place monitoring on the article but by this point, it was day 3 and I missed the initial wave of shares, retweets and quotes around this. I will never know just how many people read this but it’s in the region of thousands.

Whenever I doubt why I am doing this, when you publish something you put hours into only for it to flop, I re-read this article to remind myself – as I had no expectations for it but the messages of support I received around it, will never be forgotten.

12. National lockdown rules relaxed – we’re still stuck inside (139 reads)

This was a very painful time. My siblings and friends flooded the likes of Facebook with pictures at the pub, having haircuts, family meetups at the beach in the height of summer and the shielded were still on house arrest. I don’t want to open old wounds here – have a read for yourself.

13. Contemplating shielding coming to an end (256 reads)

In this piece, I tried to raise awareness of those who had shielded for 5 months fears and situation with the guidance coming to an end. The expectation to simply return to normal. The pressures from employers and family alike.

I have never received so many messages and questions as I did in the two weeks leading up to 1st August and the end of shielding. There were some very scared people out there – I wrote this one for them.

14. The last day of shielding (656 reads)

I wanted to write something that captured the whole shielding experience in one piece – a combination of my earlier articles. This was it and released on the last day of shielding intentionally. Another one that was shared far and wide. Proud of this one.

15. Back into the wild – the damage done to my mental health is clear (191 reads)

My first week of freedom since early March ends in me crying at the side of the road.

16. Don’t bring my son into this (159 reads)

Six weeks after the end of shielding and I am still noticing the effects of it – this time, in the most personal place of all, with my son, who developed attachment issues after 5 months stuck indoors with me.


I hope you enjoyed reading these as much as I did compiling them. There are many days and hours of work here, often through pain or difficult times.

If you would like to support my writing, please head over to Medium to follow, like and read my best work. I am paid per subscriber read and it allows me to keep this website ad-free. You can also send a donation at the bottom of this website to help us keep doing what we do.

If you have a suggestion for a topic I should cover, please do get in touch, I love hearing from you.

Your Stories: How living with chronic illness has impacted my mental health

Guest post written by: Seren Kiremitcioglu


My experience with mental health came long before my chronic illness diagnosis.

Early beginnings

At the age of nine, I developed severe clinical depression and anxiety. Rather than monsters under the bed, my head was battling with entirely different demons. My teenage years were wrought with habitual self-harm that I hid beneath my sleeves, and a constant presence of suicidal ideation.

When my chronic illness waded in, triggering a wide range of lifelong conditions, I should have been prepared for the mental onslaught. But it hit me like a brick in the face.

The day I was diagnosed with EGPA Vasculitis, I was elated. For so long I had lived confused and undiagnosed with so many random and episodical symptoms. I joked with my then-boyfriend, Charlie, about the long name, Eosinophilic Granulomatosis with Polyangiitis, and laughed at how the prescription would have me rattling like a pill bottle. It was only a few hours later that I crashed.

The crash

As I looked at the long stretch of recovery and the permanency of disability ahead of me, clinging onto hope felt futile. I knew that day that any hope for getting better was now quashed, like breath to a flame. My life had changed irrevocably – for what I thought to be the worst – and the feeling of devastation drowned out any joy I felt at finally having the answer to what was causing my severe illness.

The medicine quickly overwhelmed me. My weight ballooned with the steroids I took to recover, but because I was still so unwell while taking them, my muscle tone completely disappeared. This made walking an agonising experience, and I remember having to crawl up my staircase on one occasion.

With lung involvement being the epicentre of my illness, stabbing pains across my chest were a regular feature, like an internal firework show. Everything I could once do with the kind of ease only a teenager knows, I could no longer do at all. My love for sailing was compartmentalised, collecting dust with the wetsuit I haven’t fit in since being treated with steroids. My energy and lust for life evaporated.

Who am I?

But out of everything, the hardest part was that I didn’t even recognise who I was or who I’d become.

I resented this new version of myself; all I could think of is how much I’d changed for the worst. My fat body repulsed me, and I tortured myself over my inability to carry out daily tasks. As the old Seren floated far into the distance, I sank deep into depression and anxiety.

I didn’t like myself – I couldn’t face who I’d become. My anxiety took over when I left the house as I was so anxious about what people would think of my sudden weight gain. Each time I struggled with a daily task, I would ruminate over how futile everything felt, which only gave my depression more power. I berated myself for being a university student that couldn’t drink alcohol and couldn’t stay awake past 10pm – unless I had bouts of insomnia – in which case I would lie awake, tears of hopelessness streaming down my face. I couldn’t walk up the stairs, couldn’t breathe right. Couldn’t look in the mirror, couldn’t see the light at the end of the tunnel.

That’s when I realised what I was doing – defining myself by what I couldn’t do, rather than focussing on what I could.

Time to change

My illness had cast a cloud over my life, but it was up to me to change the narrative. Okay, I couldn’t do a lot of the things I used to do without a second thought. But I could still love with a huge heart, still complete my degree (despite the hospitalisations, operations and procedures), still enjoy various things I love such as reading and writing.

As I poured my energy into reading and writing, it clicked just how powerful words could be in day to day life. Instead of feeling embarrassed that I “couldn’t” drink, I decided to feel empowered that I “could” make the informed decision to be teetotal.

This made me start thinking of the things I could do post-illness that I’d never been able to before.

Before Vasculitis, I found it impossible to put my mental health above the demands of those who took so much from me mentally. Now that my health is the priority, I feel the power to establish boundaries and put myself first – something which I’d found impossible until the age of 22. What my mental illness had initially taken from me in terms of self-esteem and self-care, my chronic illness gave back. I never thought I’d have that power, so for my illnesses, I am grateful.


Seren Kiremitcioglu

Seren is a freelance writer passionate about mental health and disability advocacy. In her spare time, she is a Shout Volunteer, Time to Change Champion, and MA Creative Writing student. You can read more from Seren, here: www.serenkiremitcioglu.com or find her on Facebook and Twitter @serenkwriter.

There’s a lifetime of support needed between juvenile-onset arthritis and old age

This one is personal to me. I have had Juvenile Ideopathic Arthritis (JIA) since I was a kid and one thing I have learned is that there’s a whole lifetime of support required between juvenile-onset arthritis and what the general population consider as living with arthritis in older age.

This piece is adapted from my long-read article ‘10 things that must change to improve the arthritis world‘.

From first-class to economy

As a child, my experience of care from my medical team was incredible. My rare case was of particular interest to the doctors, and they threw the kitchen sink at me, from intense daily hydrotherapy to joint injections and physio. I would be admitted for a few weeks at a time to save my parents the travel but also to be trialled on every treatment and therapy going. Monitored closely for any positive or negative result – and from some of the drugs I was trialled on, there was a lot of adverse effects!

I felt a priority as ‘that kid with arthritis’. However, after several years of remission between the ages of 18-24, I had a different experience when arthritis returned with interest. It took months to get back in with my rheumatologist after check-ups were reduced to yearly when the arthritis was controlled. It took over a year to get hydro and access to basic physio. Access to a specialist physiotherapist took much longer.

It was a horrible and frustrating experience in which during that period, I lost my job, had severe pressures on my financial security and ended up with significant mental health challenges from the stress of it all.

Support juvenile-onset arthritis patients for life

Support for patients with Juvenile-onset arthritis must not end with diagnosis and treatment to the initial remission. The impact to family, career choices, the life of pain and boom and bust lifestyle all need to be considered and supported. Yearly routine check-ups are sufficient until something changes or goes wrong.

There needs to be more done for those with JIA (and other autoimmune diseases) to promptly access support in the initial stages of a flare to minimise physical damage but also disruption to their lifestyle, careers and mental health.

Juvenile Arthritis is a life of riding the swing of a pendulum. From points to where you live a relatively normal, pain-free life to others that are far more disruptive and tortuous than you can imagine. The support needs to be in place to accommodate this swing, regardless of what point you are at in the journey.

Further reading

Read more about my diagnosis of Juvenile Arthritis and the broader impact it had on my family, education and mental health in this article: The wider impact of Juvenile Arthritis

If you are a child with arthritis or parent/carer of somebody with JiA, I would also highly recommend checking out the resources on the thinkjia.org website.

10 things that must change to improve the arthritis world in 2020

I was recently speaking to a much-respected colleague about an upcoming rheumatology conference, and it got me thinking – if I had a magic wand in this year of Hollywood script events, what would I change in the arthritis realm as it is today? In no particular order, here is my list of 10 things that must change to improve the arthritis world, according to JoelvsArthritis.

1. Arthritis is not inevitable or ‘just old age’

young positive lady showing photos on smartphone to senior man while sitting at laptop
Photo by Andrea Piacquadio on Pexels.com

We all know this one. The age-old stereotype and stigma that people with autoimmune disease face throughout their lives with chronic illness. Whether it’s family, friends, work colleagues or strangers, we’ve all seen the surprise on somebody’s face when we’ve told them we have arthritis. The initial shock, the pause – don’t say it, don’t you dare say it – ‘but I thought that’s an old age thing?’.

As somebody who has had arthritis since they were ten years old (diagnosed at 12), it’s an infuriating part of the explanation and rationale we have to give to explain our symptoms, treatments; our pain. Whether that be when starting a new job, joining a club and having to cancel the first time or at the start of new relationships. It’s as awkward as it is frustrating and is the primary reason why I hid my condition for so many years once I left high school.

As I’ve grown older, I’ve seen the value in these conversations, however. It’s an opportunity to educate, raise awareness and change attitudes. As uncomfortable as it is, people like me, with juvenile-onset arthritis and those diagnosed under 40, need to speak up, to change the widely held view that arthritis is inevitable with old age, to illustrate what life with arthritis is like for a young person. The struggle decades before your grandparents get that knee replacement and the impact it has on every aspect of our lives, from careers to opportunities, to starting a family.

Education changes perception removes stigma‘. This is a little mantra of mine and what I work towards.

2. Stop attributing everything to my arthritis!

a man in red shirt covering his face
Photo by Andrea Piacquadio on Pexels.com

GPs, Consultants, friends – Stop attributing everything to my autoimmune disease! I know my body, if I tell you this is new or different, prove me wrong through science, tests, scans; don’t tell me it’s ‘just the arthritis’.

It has taken me years to get the proper treatment for migraines, nerve pain and other issues because everything is assumed to be because of either my arthritis or side effects of the treatment thereof. It’s one of the most frustrating things of living with an autoimmune condition.

I shouldn’t have to prove to you that something is different. I have lived with arthritis most of my life – if something changes, I’ll be the expert in that.

Doctors, it’s your job to find the cause, not fob me off for another six months until I return to the clinic even more unwell. Friends – politely jog on :). You’re not medically trained, and you will never know my struggle so if I complain of a new health problem; frankly, you don’t have the right to dismiss it as ‘the usual’. I came to you for support, not a diagnosis.

An example of a painfully slow process

I developed psoriasis in my mid-20’s. I had been diagnosed at that point with Juvenile Idiopathic Arthritis (JIA) for 15 years. I had plaque rashes appear, blisters on the soles of my feet and flaking of my fingernails. I raised it with my rheumatology team, but it took over a year for anyone to listen. Eighteen months after reporting this change, I was finally sent to a dermatologist, and I am not even exaggerating when I say I was in the examination room for less than five minutes. He took one look at my rashes and casually said ‘oh, that’s psoriasis. It’s moved on to attacking your skin, here’s an information sheet and a prescription for steroid cream’.

If it takes that long to diagnose psoriatic arthritis, an evident and well-connected cousin of my original diagnosis, then what hope have I got if I get something serious? Imagine if I developed cancer – by the time people stopped blaming my complaints on my chronic illness, I’m sure it would be too late. This has to change.

3. One size does not fit all – don’t tell me what I should be doing

basil leaves and avocado on sliced bread on white ceramic plate
Photo by Lisa Fotios on Pexels.com

In a world of Instagram, filters and people ‘living their best life’ (or that’s what they show us, at least!), social media has become saturated by health tips, CBD oils, foods that miraculously cure disease or the latest fad diet. If I had a pound for every DM, email or comment that I get each week telling me to speak to a specific Dr or try a new diet to ‘cure my arthritis’, I wouldn’t need a day job to support my writing.

This needs to stop. It’s not only often based upon zero scientific fact or evidence, but it’s profiting from people’s pain, preying on those who are desperate for a way out of the misery. It’s morally wrong and worse still, some of the suggestions I have had are downright dangerous.

When did it become acceptable?

Please, don’t tell me how to look after my disease or body. I wouldn’t tell you how to raise your kids or comment on your Instagram picture that you’d look better in a different dress – so why is it acceptable for you to tell me to live my life differently? Especially when you have none of the essential details required to make such decisions – such as my medication, other conditions, previous damage etc.

Who even are you to be advising this stuff anyway? A sales rep? Certainly not a Doctor. Even if you are a success story of such alternative approaches, what works for you may not work for me. Otherwise, there wouldn’t be around 10m people living with arthritis in the UK alone (Versus Arthritis, 2018).

If I hear one more suggestion of trying yoga, smoking weed or cutting out x, y and z from my diet, I’ll scream. These are the faith healers, copper bracelets and healing crystals from my youth that everyone told my parents to throw at me. Did they have arthritis? No. But it was something they offered because they didn’t know how to empathise and keep their opinions to themselves upon hearing the news.

Back then, there was an innocence, an awkwardness, a feeling of helplessness so these things were suggested. Now, it’s about money and profit and that’s wrong when the target of such things are living in a life of pain.

When my disease and pain was controlled, I was fit, healthy and athletic, sort that out, and I’ll be fine. I didn’t need a fad diet or herbal supplements to play rugby and run half marathons then, and I don’t need it now. My disease means I will be at the bottom of the barrel occasionally when it flares and nothing I consumed or did caused that.

4. It’s not just the patient that arthritis affects

black and white waves close up view circle
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Anyone who has lived with arthritis will know that it gets its claws into every aspect of your life. It affects your family, career, finances, dreams and ultimately your plans and happiness on a day to day basis. Therefore, I added this one in as a reminder for medical professionals that this needs to be factored into the diagnosis, management and long term support of those living with arthritis and other autoimmune diseases.

There needs to be greater support for those around the person living with the disease, how they can help support the individual and discussion around outlook and progression so that the family unit is prepared and educated around potential careers choices.

I was fortunate, my rheumatologist, who I still have today, told my parents when I was 14 to buy me a computer as ‘that was the future’ and look into desk-based careers. Because of that brief conversation, I ended up having a successful career as an IT Manager, but at the time, I wanted to be a gardener or jockey. The state I sit here in today, writing this at 36 years of age, I wouldn’t be in employment now if my parents and I weren’t given that nudge in the right direction.

I was lucky, but I’ve heard from hundreds of people who didn’t get that advice or had such candid conversations with their doctors about the bigger picture and prognosis.

5. Celebrate success – it’s not a competition for who’s the sickest or has the longest list of ailments

father with little kid standing on boat on wooden pier near lake in mountains
Photo by Tatiana Syrikova on Pexels.com

Of everything on this list, this is the most controversial one, even more so than the comments I’m likely to get from the yoga-preach community, but it’s something that should be acknowledged and discussed. So stick with me.

A window into my future

For context, my opinion formed on this one years ago, when I was often the youngest person in the rheumatology waiting room by at least 30 years. I would sit there in my wheelchair or on sticks with my dad, starting at the floor as I couldn’t deal with all the sympathetic ‘aww bless’ looks and comments. Or watch as couples whispered away as to why there was this 12-15 year old sitting amongst all the older people. Somebody even went as far to ask me if I was in the right place. Thanks.

It was awkward and uncomfortable and what made it worse is that it was like a window into my future. The swollen knees, twisted fingers, mobility scooters. I hated it and still to this day, its something that I use as fuel – to try and tell myself that I won’t end up like that; but we all know that’s wishful thinking.

What I was less fond of were the ones that were the polar opposite of me—the ones who wanted the attention of the entire room. They moaned the loudest, complained about the wait the most, wore every support aid under the sun, complete with the ‘pain warrior’ t-shirt. They listed their ailments like a roll call of honour. They indeed weren’t the silent shufflers I often worry about.

But apart from aggravating 90% of the room – those in the same position as them, dealing with the same problems – what did it achieve? They were preaching to the choir.


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An amazing community

Today, this is played out on a much larger scale on social media. The community that has grown around those with autoimmune disease online is amazing. I’ve never encountered such a supportive group of people. Some, although we have never physically met, I consider as genuine friends.

I try to post my life with arthritis on social media as it is, the good days and the bad days. I think it’s important for people to see the full picture, no filters, warts and all. Yet, without fail, every time I post something positive, whether that be a new personal-best walking distance, having a pain-free day or that something worked in the treatment of my condition, I am flooded with comments such as:

Lucky you, I can’t do that‘ or ‘Don’t rub it in‘.

This not only fills me with rage (it’s not a competition) but the people who are sending those messages are entirely missing the point of my work. Yes, the majority of my followers on social media are people living with arthritis because they support, share and promote the work I do (massive thank you, by the way, my work wouldn’t reach anyone with you), but my writing, advocacy and awareness regarding living with arthritis isn’t necessarily for you in terms of the ultimate goal. It’s to change the attitudes of those who don’t have the disease, to remove the stigma, to campaign for more significant research, funding and support for those in my position.

Yes, I show the ugly side; the rashes, swollen joints, pain, days stuck in bed, and that’s important, but successes should be embraced and celebrated too, not frowned upon or lambasted.

Triumph over adversity

A ‘poor me’ approach won’t change attitudes of those not experiencing the harsh reality of living with chronic illness; inspiring and rising above is what will cut through the noise.

Take an amputee, for example. 99% of amputees are not in the media, getting people talking and that’s completely fine, but it’s that 1% that try and do something incredible – whether that’s as straightforward as raising a family, being an incredible parent and telling the world about the realities of that or the Paralympian that against all the odds overcome to achieve greatness.

People must see and, in turn, be forced to have conversations about the ugly side of arthritis. Still, I genuinely believe that it’s through achievement and demonstrating what I overcome to triumph that will truly bring arthritis onto the lips and in the minds of the masses.

6. There’s a lifetime of support needed between Juvenile-onset arthritis and old age

person putting ankle foot orthosis to the patient
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This one is personal to me. I have had Juvenile Arthritis since I was a kid and one thing I have learned is that there’s a whole lifetime of support required between juvenile arthritis onset and what the general population consider as living with arthritis in older age.

From first class to economy

As a child, my experience of care from my medical team was incredible. My rare case was of particular interest to the doctors, and they threw the kitchen sink at me, from intense daily hydrotherapy to joint injections and physio. I would be admitted for a few weeks at a time to save my parents the travel but also to be trialled on every treatment and therapy going. Monitored closely for any positive or negative result – and from some of the drugs I was trialled on, there was a lot of adverse effects!

I felt a priority as ‘that kid with arthritis’. However, after several years of remission between the ages of 18-24, I had a different experience when arthritis returned with interest. It took months to get back in with my rheumatologist after check-ups were reduced to yearly when the arthritis was controlled. It took over a year to get hydro and access to basic physio. Access to a specialist physiotherapist took much longer. And I’ve already explained the wait I had to see a dermatologist regarding the new symptoms I had.

It was a horrible and frustrating experience in which during that period, I lost my job, had severe pressures on my financial security and ended up with significant mental health challenges from the stress of it all.

Support for patients with Juvenile-onset arthritis must not end with diagnosis and treatment to the initial remission. The impact to family, career choices, the life of pain and boom and bust lifestyle all need to be considered and supported. Yearly routine check-ups are sufficient until something changes or goes wrong.

There needs to be more done for those with JIA (and other autoimmune diseases) to promptly access support in the initial stages of a flare to minimise physical damage but also disruption to their lifestyle, careers and mental health.

Juvenile Arthritis is a life of riding the swing of a pendulum. From points to where you live a relatively normal, pain-free life to others that are far more disruptive and tortuous than you can imagine. The support needs to be in place to accommodate this swing, regardless of what point you are at in the journey.

7. Mental health issues are as much a symptom of my arthritis as pain and stiffness

photo of man leaning on wooden table
Photo by Andrew Neel on Pexels.com

This is another area that’s important to me, having seen my mental health fluctuate in line with the state of my disease. Every time I flare, eventually the cracks in my mental health present, sometimes in the form of depression and low mood, anxiety to other times, far far worse.

Yet in all the years I have needed mental health support alongside my flare in the form of CBT, wellbeing counselling, mindfulness and medication not once has there been any link or joined-up approach between my physical and mental health.

A dangerous time

I remember times where I have been in bits in front of my rheumatologist. Explaining how I hadn’t slept for days because of the pain, I was losing my job, I couldn’t cope etc. and all I was offered was a tissue, a six-month check-up and an increase of my anti-inflammatories. Where was the referral or even the suggestion of seeking mental health support services? Thankfully, my GP picked up the signs a few weeks later and referred me to Early Intervention but looking back at the mess I was in at that moment; the result could have been much worse.

When I am in remission, I have never had any mental health problems. I am not mentally ill at those times in isolation; it’s because my physical health is failing. I wish health services would see it in the same way and offer a joined-up approach.

8. Talk about the lifetime of side-effects from treatments to manage arthritis

white pink and yellow blister packs
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Anyone living with arthritis knows that sometimes the side-effects are almost as nasty as the disease. Writing this currently three weeks into a sinus infection thanks to immunosuppression from biologics, I often have to remind myself what the alternative is. A life of continually being under the weather is better than being physically disabled or in excruciating pain.

As you would with cancer patients, side effects of treatments, often lifelong, should be discussed at diagnosis. So why isn’t more weight given to this from the start? Yes, you might be told about the impact of going onto Methotrexate or Sulfasalazine for the first time, but I feel that more should be done during delivery of the diagnosis to prepare the patient for this aspect of their future. There’s the disease then there is treating the disease.

I appreciate there are bigger fish to fry when telling someone they have a chronic condition, potentially for life but tying into my earlier point regarding mental health’s close ties to chronic illness. I feel we should be mentally equipping people for this minefield. The treatment changes needed when drugs stop working, unpleasant side-effects etc. essentially, again, I am calling for a joined-up approach here.

9. Telling me to ‘pull myself together’ won’t fix my arthritis

tired ethnic working mother at home with playing kids
Photo by Ketut Subiyanto on Pexels.com

Just because I can’t be or do what you want from me, don’t take your frustration out in the form of telling me to ‘pull myself together‘, to ‘stop faking it‘ or that I need to ‘get on with it’. It’s upsetting, abusive and dehumanising.

Are some of these phrases ringing true for you, my friends?

I’m frustrated too, but I have to live with this and the pain 24/7, a life sentence, so if you’re frustrated because I cancelled plans or couldn’t participate, imagine how I feel about it!?

Support, empathise; don’t insult, dismiss or dilute my challenges because they don’t align with what you want – they don’t align with what I would like to do either.

If words fixed medical problems, then linguists would be in place of doctors, but comments such as these are undoubtedly capable of severe damage.

10. If talking about my arthritis makes you uncomfortable, then the conversation must continue

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If anything I write, post or share about my life with arthritis makes you uncomfortable, then I’m sorry, but we must talk about it more. For it’s that discomfort that tells me there is still a stigma to remove, barriers to break down.

As humans, we are programmed to be wary of differences in others and that in which we don’t understand. It’s the same reason why a child may ask ‘what’s wrong with that man, mummy‘, the first time they see a disabled person. It’s not wrong – it’s lack of understanding, education, awareness.

By talking about our experiences with chronic illness, we are giving people a window into our lives. The opportunity to educate them. The opportunity for them to ask questions and more importantly, the chance to empathise.

I don’t share my story for attention, it comes highly unnatural to me, making me uncomfortable, but I do it to try and enact change. I do it for others who are where I was a year or so ago; too broken and beaten down from their struggles with chronic illness to have the energy to speak up, let alone the confidence.

I speak up for those with arthritis to try and improve the quality of their lives by raising awareness with those who thankfully will never have to experience the suffering.

References

Versus Arthritis. (2018). Arthritis. [online] Available at: https://www.versusarthritis.org/about-arthritis/conditions/arthritis/ [Accessed 10 Sep. 2020].

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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As a shielded person, I am dreading Saturday the 4th of July

This Saturday, Government relaxing of the rules here in the UK is going to feel like a day to celebrate for many. But as one of the approximate 2.2m people who have been classed as ‘high risk’ and more or less confined to our homes since March under the guidance of our medical teams, it’s going to be a day to hit that ‘airplane mode’ button.

I’m not being selfish, I’m happy for you

Genuinely, I am happy for everyone. It’s light at the end of the tunnel, a much-needed boost for the economy and an even bigger shot in the arm for the country’s mental health. However, for those of us who have been shielding, it’s going to be extremely painful.

Whether it’s seeing your friends taking photos of pints at their local, your sister getting her hair cut whilst you resemble something more like the penultimate figure on the ‘Evolution of Man’ or simply your close family having a BBQ whilst you sit inside. Again. On your own. With nothing but the TV and it’s threadbare programming, your phone and damn social media.

The two most personal things for me are seeing my parents with my gorgeous nephew, whilst my 18-month-old son, who hasn’t been able to play with another child or anyone other than his mum or dad since the start of March, is stuck shielding with me.

The other will be seeing my rugby team start training again on Saturday. Before lockdown, it was my goal to try and get my health managed well enough that I could at least join in with the pre-season fitness but having very limited opportunities to move and even less medical support, it’s meant that goal is further away than ever, regardless of shielding.

Don’t be angry, try and understand. Even better, support.

So if I or somebody you know who is shielding goes quiet for a few days, maybe even a week or two. Perhaps they mute that Whatsapp group or don’t engage with that Facebook post you tagged them in. Don’t be angry with them.

They are not jealous or bitter and certainly don’t use words such as ‘miserable’ or ‘unsociable’ when trying to trigger a response. It’s more likely that they are depressed and upset and removing themselves from the situation for a few days is a way of us reducing the pain. Minimising the risk of hurt.

Your friends and family that are shielding right now need you more than ever come Saturday. They might appear distant, quiet, reserved but it’s self preservation.

I’m not asking you to not share your celebratory moments in this coming week. After all, everyone deserves that pint, trip to the beach or haircut after this year. But for some of us, it’s not even close to being over yet. We’re weeks, most likely months behind that curve. People could be on holiday in Spain in a few weeks time and I’m still not allowed to pop in my local Tesco, see my mum, let my boy go to nursery. It’s going to feel like a chasm between the healthy and the sick.

Check-in on the shielded

So don’t bait, goad, tell them to ‘man up’ or to stop being selfish – ask them if they are ok, drop them a message, see if you can get them anything. They might not reply and it might not stop them going off the grid for a few days as I plan to do (Facebook and IG news feeds at the very least, anyway) but I promise you they will appreciate it.

Seriously, speaking from personal experience of these last 4-5 months, that check-in might even be the difference between them getting through the week and a mental health crisis. Remember, these people are not just living under house arrest, they are living in fear of their lives from the virus and many have seen their health deteriorate due to treatment pauses.

They are making these sacrifices and shielding for a reason.


If you are worried about anyone during this difficult time, call Samaritans in the UK for free, 24 hours a day, 365 days a year on 116 123.

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.

Interview with Nanci from ‘My Autoimmune Adventures’

Recently, I interviewed Nanci Saad of My Autoimmune Adventures. I have been following Nanci’s Facebook blog for a number of months and she has also been a great supporter of my work.

Given she has a number of autoimmune conditions we’ve not covered on this website before, I thought it would be great to invite her along for a chat. Little did I know that it would be one of the most eye-opening and inspiring stories I would hear in my time of running this site.

I hope you find it as interesting as I did and a massive thank you to Nanci for being so candid.

The interview

Introduce yourself to our readers

Hello! My name is Nanci. I’ve somehow reached 62 though it seems I was a high school cheerleader just last year. My own children are now older than me.

Career-wise, I was in the aesthetics industry for 30+ years. I started as a free-lance make-up artist, moved in to retail, then began managing med-spas, and finally became a plastic surgery consultant. No, I never got a lift but only because medical got in the way.

I was born in Southern California with the love of horses in my blood. I received my first real horse around age 10 and that was it. I’ve had them in my life, most of my life, ever since. Before I got sick I worked full-time and was a fitness fan and Paleoite. I strength-trained, did cardio, power-walked with my dogs, hiked in raw mountains when I lived there (no concrete trails with rails), and mucked my horse’s corral. I was also born to physically move and I did. Some would say I was antsy, others that I was disciplined. Either way, it felt good and I needed it.

If you wouldn’t mind disclosing, can you tell us a little bit about your chronic illness(es)?

I have an Autoimmune Disease Cluster or Autoimmune Syndrome as some physicians call it.  I’ve been diagnosed with Autoimmune Encephalitis, Lupus (SLE), Sjogren’s Syndrome, Hashimoto’s Thyroiditis, Lichen Planus, Rheumatoid Arthritis, and Inflammatory Arthritis.  My first diagnosis was the thyroid disease at age 32.  I was textbook in my symptoms, had a great doctor, received the right strength of HRT from the get-go, then went on my way.  My next diagnosis of Lichen Planus came in about 2008,  Lupus came in 2010, Sjogren’s in 2012, Encephalitis in 2014, and RA in 2016.  Inflammatory Arthritis was called in 2018.

I was “lucky” in that all of the diagnoses came easily though I never suffered much from any of them until Encephalitis.  I would pass off random days of mild malaise to “a bug” or just “off my game”.  It wasn’t until later that I found out those incidents were autoimmune related.  Over the years I did have incidents which hospitalized me though a source for the problem(s) was never found and once I recovered, off I went.  I was clueless.  I didn’t even know Hashimoto’s Thyroiditis was an autoimmune condition.  When the others came I just thought to myself what strange names these were but never looked in to the diseases further since I was generally feeling healthy and fit. Oddly, once I began treatment, classic symptoms of each disease manifested dramatically and I don’t understand why.

As a result of these diseases I sustained brain damage, neuromuscular damage, lung damage, kidney damage, joint and tendon damage. When my body becomes inflamed, my heart gets involved as well, and when encephalitis hits, I not only have a miserable head to contend with, I have symptoms of dysautonomia.

Could you tell us about your diagnosis?

Encephalitis is the condition which upended my world.  The symptoms manifested in Fall of 2011.  I had total vision loss in my right eye, sudden erratic blood pressure, arrhythmia, paralysis, migrating neuralgia, tremors, muscle spasms, loss of balance, right ear hearing damage, visual disturbance and damage, and absences seizures.  Brain disease causes me to get very drowsy and weak.  The brain is our motherboard and when it’s damaged, the whole body goes awry.  It was the most frightening, disturbing situation I’ve encountered without having any reasons why it was happening, for 3 years. The doctors at that time felt I was having strokes or TIAs.  One surgeon wanted to operate on my cervical spine but my guts said NO!  Autoimmune disease was never a consideration though I mentioned that I do have them.  Autoimmune Encephalitis is very rare and life threatening so most doctors have never heard of it.

I just carried on the best I could, taking medications that were making me worse, continuing to work and manage all home obligations until I bottomed out.  I was very disconnected mentally, as if watching myself from another place. When I told my orthopedic surgeon that “my legs won’t obey my brain” and asked him if a shoulder injury would cause my entire arm to become temporarily paralyzed, he exclaimed with wide eyes and urgency that this was a BRAIN PROBLEM and to see a neurologist stat.

But I did not. At that point something else had taken over and life was surreal. I lived alone, and still do, so I didn’t have another body in the house to point me in the direction of help or tell me how awful I looked and sounded. I called myself a Cyborg. But two weeks after the orthopedic surgeon’s orders I ended up in the hospital.

Because the hospital neurologist wouldn’t accept me as a patient after my release, I had to hunt on my own. The neurology clinic I found saw me within a few days and began diagnostics. I was fortunate that the primary neurologist was familiar with and had studied Autoimmune Encephalitis with the top specialist worldwide. By this time I was walking close to my dirt nap but within 2 weeks I had been diagnosed and urgent treatment began. This doctor saved my life.

I love your Facebook blog, My Autoimmune Adventures. Tell us a little bit about that?

Soon after I was diagnosed, through the fog and chaos that was now my brain, I began writing my blog on Facebook to a party of one. I used to love to write and draw and do everything creative, but all of those skills were gone except a bit of writing skill. But it didn’t matter. I needed to get the trauma of my experience out of my system by writing as I had no one to talk to about it other than the doctors (who have no time for talking), and I didn’t want to burden anybody in my family, except my pets who actually were my saving grace.

I wake up without ambition and go to sleep without accomplishment

Honestly, at that time, I don’t even know how much sense I was making. I had episodes of “word salad”, aphasia, absence seizures which would last hours sometimes. I’d sit at the computer to type an entry then off I would go in to outer space only to snap back and hour or two later. But I kept pushing forward, telling my story as it unfolded, and still do to this day. I’ve never looked back to see how I was then but one day I will. I doubt I’ll recognize myself.

Was there a single event or reason that made you start journaling your personal experiences?

My writing was completely spontaneous.  No one or nothing compelled me to write.  But history is the best resource and having once loved to write in general, I knew it would be cathartic to spill my guts out loud, so to speak.  I wanted to tell the world about this madness!  I knew there had to be others.  And as I wrote I learned not only about autoimmune encephalitis but autoimmune disease in general.  I found others like me.  I discovered how kind and interested healthy people are in this underbelly of the medical world.  Eventually I wanted to educate and create awareness.

If you could give one piece of advice to somebody newly diagnosed, what would it be?

Wow. Advice to the newly diagnosed. First, know you are not alone. Find others like you. Educate yourself on your condition! (If I have to pick one that would be it. Do not rely solely upon the doctors for everything. A patient MUST be proactive!). Set up your patient portals and learn to understand your lab results and diagnostic results. Join support groups which are helpful but do not dwell in them. (Even support groups have cliques that can be tiresome and members who do not seem to want to move forward in life which will bring you down). Eventually you will want to create your life, your way, with your level of illness. Find your way to acknowledgment and acceptance of your unwanted “companion”. Love yourself. Be kind to yourself. Get a therapist, especially one who specializes in chronic illness. This is one piece of advice with many components, isn’t it?

Through your journey to diagnosis, is there anything you would have done differently?

Would I have done anything differently? Another tough one. Looking back I think my situation was handled as good as it could be. Although my husband and I are long-separated and divorcing, we are still friends. When he realized how very sick I was, he got involved. He’s very smart, very logical, and very rational and I needed that. He went to every single encephalitis-related appointment with me otherwise I never would’ve made it as there were times I couldn’t understand language. And the commuting made matters worse. He took charge of the doctors’ relationship with me and prevented me from running amok in conversation. Rheumatology is incredibly complex so I would strongly urge a patient with any autoimmune condition to have a level-headed companion at every appointment to take notes, reaffirm what the doctor said, understand the process, and be able to reassure the patient later when emotions can run wild. (With encephalitis I need a neurologist and rheumatologist so it got extra sticky at times.) We look back and discuss what we could have done differently.  We learned a lot.  Many physician errors were made which cost me a lot, but we just kept forging ahead.

It’s a difficult time for everyone at the moment but I know a lot of JoelvsArthritis readers are feeling especially isolated as routine appointments have been cancelled to tackle COVID-19. Do you have any advice or perhaps a message for those in isolation with autoimmune conditions?

My life hasn’t changed a whole lot since COVID-19. Honestly! I’m disabled from brain, nerve and muscle damage. I have fatigue from all the diseases combined and a special kind of drowsiness from brain disease. Although I was still managing to saddle up and ride a little until 2016, I’ve been more or less housebound. But being a nature lover I take myself on “health walks” to breathe fresh air and see any kind of nature I can lay my eyes on.

Find your way to acknowledgment and acceptance of your unwanted “companion” 

Naturally, though I loved socializing at big galas (back in the day), I’m a loner at heart. I’m pretty good at keeping myself company. Frontal lobe damage diminishes the capacity for ambition making accomplishments nearly impossible to reach. The desire could be there but the ability is lacking. I’m learning to adjust. My go to motto is “Be Prudent Without Being Paranoid”.  Those of us on immunosuppression must be aware at all times. Now we have to be aware of yet another virus. Despite the frenzy, my state-of-mind is the same. I stay abreast of the news without becoming addicted, I practice every precaution, I say a little prayer, then move on. I don’t feel a particular fear as I’ve already been very, very ill in the course of this disease. I try not to dwell on things out of my control.

What are your plans or hopes for the future, either with your Facebook page or in general?

My plans are to move the hell out of this senior community which was by far the worst decision made on this journey of mine. I lived on horse property in the High Desert, far away from my specialists. After a few years we concluded I would be better off if I moved closer to them and family. But it was not better. As a matter of fact I’ve had more negatives here than at any time in the last 9 years combined and that’s a whole other rotten story. I’m most comfortable in wide-open space so I’m moving back to that, but maybe in a different state near my daughter. I’m grappling with some emotional issues over my physical condition and where I expected to be at this time in my life, but I think I’m getting closer to making a solid decision. I would like to rescue an old horse to be my buddy and ride again. That is my goal.

How can people find you to follow your story?

I’m only active on Facebook, under “My Autoimmune Adventures” or @mytwistedsystem. I welcome comments and messages of all sorts.  It’s a public page. I have quite a collection of photos of a variety of symptoms from the various autoimmune diseases I have plus videos. I post EVERYTHING related to my disease, including surgery photos some might find unpleasant. But if it’s my reality, it goes on my Page!