Episode 8 – World Arthritis Day Special – 24hrs with Arthritis

In this special Podcast episode for World Arthritis Day 2021, I document a day in the life of somebody with arthritis – sharing my routines, the management of my condition and talking about the raw, unseen side of arthritis and the suffering that goes on behind closed doors. I also answer some of the questions you sent in on the day.


Recommended Reading

https://joelvsarthritis.co.uk/wego-health-award-winner-and-exciting-new-roles/

https://joelvsarthritis.co.uk/trying-to-be-normal/

https://joelvsarthritis.co.uk/chronic-illness-and-mental-health-an-inevitable-combination/


If you’ve enjoyed this podcast, please don’t forget to subscribe on whatever platform you are listening to this on, leave a review and send me your comments and feedback via email.

It helps massively and allows me to improve future content and episodes.

You can read hundreds of articles about chronic illness, awareness, and how I manage pain, parenting and my mental health alongside my arthritis here.

Get in touch with Joel at:

Twitter: @joelvsarthritis
Facebook: facebook.com/joelvsarthritis
Instagram: @joelvsarthritis
Twitch: /joelvsarthritis
Website: https://joelvsarthritis.co.uk

Facebook private support groups: Arthritis and Autoimmune Support Group & Chronic Pain Club.


Pain.Company

The Pain.Company was created to raise awareness of chronic pain and illness. To give a voice to the millions living with daily, relentless pain. Shop here.

You’re not alone

In this special poem written specifically for World Arthritis Day 2021, I try to share some insight on what it’s like to live with Arthritis and the ‘unseen’ side that only those who suffer know.


When remission builds you up
For a flare to cut you down.
When everyone around you
Cannot discern your yesterday to now.

When the strength to say ‘I can’t’
Is lost in someone else’s pain.
So we tell the world we’re fine
Carry the agony in place of shame.

When a consultant doesn’t understand
Or ask the reasons why –
It is more than test results and X-rays
And pain – why we cry.

When the fear of tomorrow
And grieving of yesterday
Steal us from this moment
Replacing memories of today.

When the guilt eats away
At any confidence you have left.
The weight of burden you now carry
Suffocates upon your aching chest.

When faced with an impossible choice
With the energy that remains.
To be a parent, present, or lay
In a body that wraps your mind in chains.

When the burning gets too much
And you’re ready to tap out.
Remember you’re not alone, please –
As in this desert of ignorance
There is a community, despite the drought.

WEGO Health Award winner and exciting new roles

To followers of my social media, none of this will be news. However, I mustn’t assume that everyone is following my socials, and it’s been a while since I’ve posted an update on the website, so here’s a roundup of what you may have missed.

WEGO Health Awards

The big news is that my ‘Joel vs Arthritis’ Facebook page won the ‘Best in Show: Facebook’ award at this year’s 10th WEGO Health Awards, which is probably the most significant moment in my advocacy career to date.

Unbelievably, I was nominated for a staggering eight categories, in what was my first time being nominated for anything regarding ‘Joel vs Arthritis’. What makes the achievement even more incredible is that anyone can nominate a member of the WEGO Patient Leader network, but the six finalists for each category are decided by the three nominees with the most endorsements from other patient leaders and the other three being ‘judges picks’. I am a novice in this field, so I received very few endorsements and didn’t chase for them on social media. So it feels extraordinary for the judges to notice my Facebook page out of 21,000 nominations!

What are the WEGO Health Awards?

For 10 years, the WEGO Health Awards have proven to be one of the best ways to honour, recognise, and celebrate the work of patient advocates, influencers and healthcare collaborators who are changing the patients’ lives and transforming healthcare – often without any formal recognition.

Top industry experts and sponsors select the winners based on their use of social media, their fit for the award for which they’ve been nominated, and how effectively they engage their online community. The limited feedback I received has complimented our community on levels of engagement, my candidness and how you respond to that. Hence, I have to thank all of you for your comments, shares, and how you selfishly support one another on my Facebook page and support group.

You can find a complete list of my award nominations here: https://www.wegohealth.com/Joel4/awards.

To view the brief awards ceremony, you can watch the recording here: https://fb.watch/8qHCP1R6_1/; note that the Facebook Category starts around 9m20s into the video.

Many tears were shed! 😀 My Instagram post (below) at the time explains why.

What’s next?

The most remarkable part of winning a WEGO award for me is the recognition from your peers and industry experts. Validation that what I am doing is having an impact somewhere. What started as one guy sharing his story, out of frustration more than anything, has lead to this moment in just two years. I never thought my words could help others. Still, now I know they can, it’s a powerful thing, and I plan to do as much as possible for arthritis and psoriatic disease awareness now that I appreciate the opportunity all of this presents.

I have already started to see the doors that this award can open in my inbox, and I am talking to a couple of parties about how we can use this to raise awareness on a bigger platform. However, the award itself also comes with a significant prize pack, including:

• Recognised as a HLTH social media ambassador
• Featured as a world’s top patient expert at the HLTH Conference (Boston, MA), as well as industry exposure opportunities throughout the year
• Seat as compensated 2022 WEGO Health Patient Leader Advisory Board member

So you can expect to hear a lot more from me over the coming year!

I also have the opportunity to attend the HLTH International Health Conference in Boston (USA) this month – more on that soon as I try and navigate all the various Covid restrictions with a disability at short notice! Watch this space 😉

IFPA International Psoriatic Disease Ambassador

I am delighted and honoured to announce that I have been appointed as an ambassador for the International Federation of Psoriasis Associations (IFPA).

As just one of a handful of global ambassadors, this new pilot Psoriatic Disease Ambassador Program will support individuals in communicating their lived experiences with psoriatic disease.

This program was created to promote the role of people living with psoriatic disease in advocacy, research, and community-building around the world. Thus, giving me an international platform in which to raise awareness.

About IFPA: A non-profit organisation uniting national and regional psoriasis associations from around the world.

Psoriasis and psoriatic arthritis affect millions of people across the world. This is a serious global health challenge, with a range of unmet needs. People with psoriasis or psoriatic arthritis may struggle to get a correct diagnosis or adequate treatment, have limited access to care or face persistent stigma and discrimination.

As the key global psoriasis advocacy organisation, IFPA campaigns on behalf of all people with psoriasis and psoriatic arthritis. Most psoriasis associations across the world are IFPA members. Their goals are to empower its members, improve living conditions for patients, raise awareness of psoriasis and psoriatic arthritis and cooperate with fellow stakeholders.

It is a true honour to be offered this role, and I thank every one of you for encouraging and supporting me to keep moving forward with my advocacy. I could not do this without you.

Keep an eye on my social media channels for more information and content regarding this ahead of World Psoriasis Day on 29th October.

NRAS ‘Rheum for Inclusion’ Advisory Board Member

I’m super excited to announce that I have been appointed to the National Rheumatoid Arthritis Society (NRAS) Rheum for Inclusion advisory board.

As a group, our mission is to promote NRAS’s services and diversity and ensure that the charity reaches and caters for all communities.

I’ve already forged some great relationships with people at the charity and have been eager to be more involved since the launch of Juvenile Idiopathic Arthritis – JIA at NRAS, so this feels like the perfect opportunity to contribute and give something back.

I think that’s enough for one day. I don’t think I’ll ever be able to top this post in terms of announcements! 😀

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.

Continue reading…


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.

Trying to be normal, when normal is everything I am not

I am writing this piece on around six hours of sleep since the start of the weekend. Today is Monday. I am a zombie. Emotionally numb, yet physically, and unfortunately, far from it.

I’ve spun so many plates in what would have been a period of rest for many that the room now appears to move a little if I close my eyes. My balance is off. I feel nauseous from the exhaustion. Unsure of my footing, much like my relationship with arthritis.

Everyone assumes our condition is all ‘pain and swollen joints‘, but the reality is far more complicated. There are many layers to this onion of so-called ‘invisible illness’. Which, as I sit on this bathroom floor scribbling this down, sweat pouring from my brow, unsure if it’s from the pain or lack of sleep, doesn’t feel very invisible to me. Not if you’re in this windowless room, anyway.

For those who haven’t caught a glimpse – a bitter taste of this world through either experience or the support of others, let me cast some light on this place so rarely seen and talked about far less.

Pain is but a spark in the fire

It’s obvious why pain is the thing most associated with our condition. On the face of it, it’s the most obviously impacting element of arthritis in our lives, but it’s also the most relatable element of our disease. Virtually everyone has experienced physical pain or injury in their lives, so it provides a solid platform of understanding when trying to discuss the experience of arthritis with others.

Remember that time you *insert painful event here*, well imagine feeling that constantly, in multiple places‘ is something I have caught myself often saying. But upon reflection, the pain is just the spark. A minor inconvenience, similar to a nagging feeling of guilt after a poor personal decision – it’s always there, chipping away at me, wearing me down, but it’s not that intense feeling of burning in my joints that’s the problem; it’s the situation and everything that comes with it. It’s everything that comes with pain that impacts my life the most. Allow me to explain.

So tired of being tired

Pain is the thing that we tell people is the problem. As frequently as somebody with chronic illness says ‘I’m fine when they’re really not. It’s the easy answer, but it’s only one side to the story. I’ve already mentioned the impact on my sleep. I would take the pain every day of the week (if I had a choice!) over this horrible part-intoxicated, part-out of body experience that seemingly comes with extreme exhaustion from days without proper sleep. That sickening feeling of nausea in the pit of your stomach, accompanied by sweats, thirst and an inability to order your thoughts. It’s a feeling I first experienced from high school sleepovers and parties, where you’d operate the next day feeling like you were barely alive. The difference between those parties and deprivation of sleep due to pain is this lasts far longer than a weekend, there were no stories that you will recount with a fondness for years to come, and nobody had any fun.

Those nights are some of my worst experiences with arthritis. From feelings of separation and loneliness in hospital wards as a child, where I had nothing to entertain me other than the gossip I could overhear from night staff whilst every unfamiliar child around me slept, to today, where I sit alone downstairs and watch the early hours pass as my family sleep. Wondering how on earth I find the strength to be a dad, a husband, employee or simply a functioning human for another twelve hours without crashing my car or falling down the stairs.

It’s not the permanent pain from our conditions that all too often brings such tragic and upsetting ends to people’s struggles. It’s the isolation—the loneliness. The feeling like nobody understands and the guilt you place upon your shoulders for not being all those things you so long to be if you just weren’t so f*cking tired all the time. The guilt eats away at you, like water dripping onto rock over thousands of years. The missed events, those days you have to coast playing with your kids because you have nothing left in the tank for the plans you originally made. All those times you didn’t smile because even that hurt your face.

Like the water, even the smallest, most delicate things leave their mark if given long enough. And after over 25 years of living with arthritis, those thoughts and feelings have left their scars. Huge cavities that still trip me up today.

Trying to be normal

With that little peek behind the curtain into this dark, windowless room, filled with sweat, tears and isolation, here comes the issue. First and foremost, we talk about our pain. I do it myself, to the point where I’m fed up with hearing my own complaining. Then occasionally, we maybe talk about fatigue. However, my experience is it’s not well understood – with people assuming you’re just ‘a bit tired‘. Finally, we perhaps mention the pills or swollen joints – and this is where the assumptions come from.

Yes, there are idiots out there. A minority of people who discriminate and hate, but many of the assumptions we encounter in everyday life come from a good place. Hence, the bits we talk about. So when I call in sick for work with ‘pain’ because I don’t want to have to explain or make somebody uncomfortable with details of depression, anxiety, fear and how I cried in the bathroom so my son didn’t see me upset, I am, of course, fuelling the assumption that pain is my biggest problem, when it really isn’t.

So nobody outside of this windowless room knows the struggle that goes on within—the plate spinning. The multiple layers of complexity that come with living with a variable condition, which means that today I can be out jogging and tomorrow writhing around in agony, unable to walk. The mental health strain of all that uncertainty – not just dealing with pain, but managing lack of sleep, cancelled plans, missed opportunities and living in constant fear for your career and family’s financial security.

So when we talk about arthritis and similar conditions being invisible, it’s because, in my experience, we’ve made them as such to try and be normal. To avoid unnecessary attention, certainly in my case. But normal is simply conforming to a standard – an unwritten majority expected behaviour. Well, I’m trying to set a new one—a normal where we talk about our challenges, whether people feel uncomfortable hearing them or not. As sharing these experiences, educating and kicking open the door to these windowless rooms to discussions and questions is the only way to change attitudes.

This is why I advocate.

Everything has its time

I stumbled upon this powerful image by Darshan Gavali and felt compelled to put words to it, describing my interpretation of chronic illness. I hope I’ve done it justice. First draft.

Remission (noun): a temporary diminution of the severity of disease or pain.

We forget, for a time, that there’s a debt that must be paid.

When the moments turn to hours and the hours’ blur with days.

Moments where we delude ourselves and forget about the pain.

Like it will never return, but with it, our hope can only fade.

As a well-used book, we never retain the same look, or feel.

Scars they cover scars; we can only adapt. Never truly heal.

The flares they grow longer, and with each, the realisation we can’t be the same.

For remission is not a solution but a temporary diminution…
of the severity…
of our pain.

Joel (‘vs Arthritis’) Nelson – An introduction and why I advocate

An awful lot has happened for me and my campaigning in the last two years. What started basically as an online journal about my experiences, has led to me having tens of conversations every single day with thousands of arthritis, chronic pain and mental health patients, parents of kids with JIA and even doctors and pharmaceutical companies.

In year one, I called myself a ‘writer’. Year two an ‘advocate’. Now, with the launch of Pain.Company and as I continue to add to my list of ‘ambassador’ and ‘patient leader’ titles, I don’t even know what all this is anymore! 🙂 Therefore, I figured that all the new people following me on social media, joining my Facebook Support Groups or stumbling across my writing or work for charities must have a lot of questions too – so here is an introduction to me and ‘Joel vs Arthritis’ at two years old.

My conditions

Juvenile Idiopathic Arthritis (JIA) – Onset 10 years of age. Diagnosed 12 years of age.

Psoriatic Arthritis (PsA – but referred to as Psoriatic-associated JIA due to me being under the age of 16 with initial arthritis diagnosis) – Onset early 20’s (although rashes were there in my teenage years without being linked). Diagnosed in my late 20’s. I also experience psoriasis and palmoplantar pustular psoriasis under this banner.

Chronic Pain/Neuropathy/Depression/Migraine – we’ll come on to that another time!

My awareness story (in short)

I have lived with arthritis most of my life, with onset shortly before my 11th birthday.

At the start of 2019, after years of planning around my health, I became a dad. This unfortunately also coincided with a short-notice enforced treatment change by my local authority, which took me from a rugby playing, long-distance running, fit and healthy shining example of what you could do with well-managed arthritis to being back on crutches, sometimes, stuck in bed for days. It devastated me. I lost touch with friends, lost my independence and worst of all, significantly impacted my young family at the most precious of times.

After some dark months, where the setback and pain impacted my mental health to dangerous levels, I created my blog, JoelvsArthritis.co.uk, to share my experiences on the advice of family and doctors. What started as a personal diary quickly became a vehicle to raise awareness and advocate for those living with arthritis and other autoimmune conditions.

I had spent 20 years hiding my health challenges – simply changing hobbies, social circles or picking up sticks and moving on with each passing flare and remission cycle, rather than explain what happened to me or where I went. It took becoming a father for me to find my voice.

The momentum of it all has shocked me. I have written for several leading autoimmune and disability charities in my short writing career, been published in print, and am an advocate and ambassador for a number of organisations.

Specialising in writing about parenting with a disability, chronic pain and mental health, I hope that my candid, no-filter accounts of living with chronic illness will make a change in both attitudes and support for those living with autoimmune disease.

In 2020, the Joel vs Arthritis Podcast was launched, which is available on iTunes, Spotify and wherever else you listen to podcasts. In 2021, The Pain Company was launched, a clothing brand to raise awareness of chronic pain and chronic illness and give a voice to the millions living with daily, relentless pain.

My advocacy reasons

After years of planning around my health, I became a dad in January 2019. The same month, people like me with autoimmune conditions in England were informed that we were being switched from Biologics treatments to ‘Biosimilars’ as part of an NHS cost-saving move.

We were given little notice – just two weeks between a consent form thrust under my nose at a routine appointment and the change. However, the information we were provided clearly stated that we could switch straight back should there be any adverse effects.

At the time, I was a shining example of what biologics could do for the quality of life for people like me. I was in a wheelchair as a child – the prospect of biologic therapies not only gave me hope through my childhood, but when a flare became out of control in my 20’s, and I finally gained access to them, they changed my life.

Within two weeks, I was pain-free. Within four weeks, all of my psoriasis rashes had vanished! It was incredible. I promised my doctors that I would make the most of the opportunity, and I did. Within a year, I had dropped 25kgs in weight, played competitive sport, and ran half marathons.

Within a month of the switch, I was in agony. Then the rashes returned. Despite the promises of switching back, it took me 11 months of fighting and crying in doctors rooms to get back to my original treatment. But by then, it was too late. My first year of parenthood had been tarnished—harrowing experiences like not being able to carry my son. Worse still, two years on, I remain in chronic pain despite my arthritis being back under control.

I don’t want anyone to go through what I did. I don’t want anyone to be misled like I was. We need to consider more than inflammation markers, x-rays and £s. I advocate to be a better role model for my son and enact change as to how people’s individual health is managed – where no number on a spreadsheet should overrule what’s best for the individual’s health, career, relationships and mental health.

My advocacy summary

My advocacy continues to evolve, sometimes monthly – but if I had to describe my work in one line, I’d like to think I am known for my brutal unfiltered honesty, my willingness to leave everything on the table as I detail life with chronic illness and parenting, tackling difficult subjects and my enthusiasm to engage and converse with my audience.

What started as a blog, documenting my personal experience, quickly became being asked to write articles for organisations such as charities and health institutions. I discovered I had a writing talent I never knew was there.

Within a couple of months, I discovered through a wave of emails, messages, and support that thousands of people were out there, just like me, before finding my voice, feeling alone, isolated, and unrepresented. With this, I soon started writing not just for my own personal well-being but also for these people.

Now, I write with two audiences in mind – those feeling alone, suffering in silence as I was, and those who have no experience or insight of arthritis and chronic pain, who think it’s all old age, inevitability and swollen joints. So every word I write tries to change those perceptions whilst letting those with arthritis and pain know I see them, and I fight for them.

Today, my social media platforms have replaced my daily life blogging, as my audience has grown. Most of my spare time is now spent being an active part of the arthritis and mental health community, participating in campaigns, championing the work of charities, being interviewed for podcasts/radio as a guest, or hosting my own podcast to raise awareness and writing pieces in my raw style to prompt conversation around certain events, topics or awareness days.

I also run multiple Facebook support groups and am an ambassador for a growing list of charities, organisations and initiatives – of which I hope to expand on.

I have no plan – I go where I feel my voice is needed the most with my advocacy work. I hope that continues.

My proudest advocacy moment

My first published article in print takes some beating. I stared at the magazine for over an hour! It was probably the moment I realised my story could be so much more than just ‘my story’ – it could be a conversation starter that prompts change. That brings people together. That alerts people to something they were completely unaware of. That’s pretty special – and inspiring.

I was fortunate enough for that moment to come very early on in my advocacy journey, so I hope there is much more to come for me – but it unlocked a door in my head and set me on this path, and therefore has to take pride of place.

My motivation

My son.

Before I became a parent, I hid my health challenges. I battled through the good and the bad days, put on a brave face – played the part of the fit and active sporty guy who also played in a band—the guy who had lots of friends and was never home.

Then when I flared and lost my mobility, I burnt everything to the ground. For me, back then, it was easier to quit that hockey club or stop playing guitar in that band and resurface a year or two later as a cyclist or a member of another club than try and explain to all those people why I had to cancel, why I disappeared, worse, why I could no longer walk, let alone run.

I’ve tried 100 different hobbies in my lifetime, living a life that resembles a series of chapters with no common thread – but it means I’ve lost a great deal, too, really good friends being the primary point of pain.

I’d like to think that the medical experience I had in 2019 alone would have pushed me into finding my voice eventually. But, still, I suspect it would have, in fact, pushed me further down that dark hole of isolation in order to try and protect myself from the explanations, the ‘isn’t that what old people get?’, the uncomfortableness and swallowing of pride.

However, I know that becoming a father changed something in me – particularly in those unexpected dark days as I adapted to carrying him up the stairs whilst on sticks. It turned almost certain anger and bitterness into a purpose—a motivation. A desire to change personally and to try and make change for the world my son would inherit.

I wasn’t proud of who I was back then – all twisted and resentful, looking for someone to blame for trying to fix what wasn’t broken medically, the thief that stole my freedom. My social life. So I sure as hell knew Dylan wouldn’t be proud of the person I was becoming either.

I turned the darkest period of my life into something I can’t wait to wake up each day and work on – and I couldn’t have changed a habit of a lifetime without my beautiful boy.

Titles held

Psoriatic Disease International Ambassador – IFPA (August 2021 – Present)

Rheum for Inclusion Advisory Board Member – National Rheumatoid Arthritis Society (July 2021 – present)

Patient Ambassador – Ampersand Health (May 2021 – present)

Owner – The Pain Company (May 2021 – present)

Ambassador – WORD Day (March 2021 – present)

Podcast Host – ‘Joel vs Arthritis’ Podcast (December 2020 – present)

Writer and Community Advocate – Health Union (March 2020 – present)

Partner organisations

(who I have worked with to raise awareness)

Health Union

Psoriasis Association

Versus Arthritis

National Rheumatoid Arthritis Society (NRAS)

JAR Project

WORD Day

NASS/AS One

Arthr

International Federation of Psoriasis Associations (IFPA)

Support Groups Run

https://www.facebook.com/groups/joelvsarthritis – Arthritis and Autoimmune Support Group – A private information and support group for anyone interested in or affected by arthritis and other autoimmune diseases.

https://www.facebook.com/groups/paincompany – Chronic Pain Club – A public group for those in chronic pain to support each other, share tips and meet others that understand – by the Pain Company

https://www.facebook.com/groups/chronicillnessdads – Chronic Illness Dads – There’s a Facebook group for every illness, but what about dads? Whether you consider yourself disabled or not, if you have a long term health condition and somebody calls you dad, this is the place for you! A private group.

Socials

You can also find me:

Facebook: https://www.facebook.com/joelvsarthritis

Twitter: https://www.twitter.com/joelvsarthritis

Instagram: https://www.instagram.com/joelvsarthritis

YouTube: https://www.youtube.com/channel/UCZrEJm2eWSSpXx8qMTjdgWA?view_as=subscriber

Get in touch

If you’ve gotten this far and think I can help your cause, event, organisation, write freelance for your publication, would like to get a quote from me or permission to use an article. Then get in touch here.

If you’d rather send an email: contact@joelvsarthritis.co.uk. Please see my portfolio for examples of my work for third parties.

Disclaimer: I talk candidly about my personal health journey, but I cannot help you personally with your health issues. My contact forms and email are not for medical support. Please contact your GP for medical assistance.

The suffering

I did too much yesterday.
I didn’t drink enough.
I thought I was someone else,
I didn’t move as much.

I was lazy – ate terribly.
Delayed my biologic by three days.
I didn’t have time to be sick,
But now my health will pay.

Everything is heavy now.
Everything is sore.
Stiffness that only arthritis brings,
With the pain, the pills and more.

I did too much yesterday,
I flew too close to the sun.
As I wake with searing joints,
But of strong mind,
And a fire in my heart,
But unable to carry out their
will;

I know the real suffering has begun.

Joel nominated for four WEGO Health Awards!

I recently discovered that I have been nominated for a WEGO Health Award, in the category of ‘Rookie of the Year’. I was absolutely blown away, as per my Facebook post below at the time. I think what was particularly touching was that my initial nomination was by somebody I have looked up to and aspired to be like when I first started this journey, a fellow writer and an amazing advocate.

Shortly after, one nomination became nominations in four categories, made by others:

Best in Show: Facebook
Best in Show: Instagram
Best Kept Secret

You can view the nominations here: WEGO Health

I tried to give some context as to why this meant so much to me on my social media:

Let me try and wrap some context around this. I might appear confident because I can talk well (or ‘rabbit on’ in Norfolk terms!) and am prepared to share my story, warts and all, but every day is a confidence crisis for me.

But, within a couple of weeks, I was receiving daily emails from other people also suffering in silence, wanting someone to give a voice to their experience of daily pain, letting people down, trying to hold onto careers etc. etc. Within weeks, I was asked to write for other organisations, where I could be found on social media, etc., and it entirely snowballed from there.

I think I wrote for myself for about a month. Now everything I write, post, share, every interview I do, campaign I say yes to – I am now always conscious of the two audiences to my words – those that suffer who I try to represent and those that need to be educated about our suffering.

None of this was by design. I’m not too proud to admit it. But I am also proud to say that after the birth of my son, it’s the most fulfilling job I have ever taken on, and I do it happily. So I don’t need any award or recognition.

However, especially if you follow me on Instagram, every day is a battle, either mentally or physically, and I thank you guys for giving me an outlet. For helping me as much as anything else. Our private conversations, the article shares; to simply observe you wonderfully supportive people help each other on the Support Group – that’s where the real payday is for me.

So – in my head – I deserve nothing. I beat myself up for the sick days when I can’t do more. I feel like I am moaning too much as I try and show the realities of living with fractured mental health. I apologise a million times when I leave someone waiting on an article release, podcast interview, or email reply.

I feel like I could do SO much more without my limitations…but I guess then, I wouldn’t have a story worth telling.
I will never understand how this has taken off as it has, or some of the thank you messages I receive. But, from the bottom of my heart, thank you for helping me find me amongst the dark – and find the greatest friends I’ve never met.

If you would like to know more about the WEGO Health Awards, including the process for how winners are selected, click here.

If you would like to nominate me personally, see here.

Episode 7 – Suruthi’s Story and #WearPurpleforJIA

In this episode, I am delighted to be joined by Suruthi Gnanenthiran, an active member of the Instagram arthritis community, volunteer for NRAS (the National Rheumatoid Arthritis Society here in the UK), friend and a great source of support to me personally, and I am sure, many others.

This is a special episode of the podcast as not only do we hear Suruthi’s personal JIA story, but we celebrate and raise awareness of JIA @ NRAS’ #WearPurpleforJIA day on 18th June, as well as their wellbeing week – a new full week of sessions and events running from Monday 14th June – Friday the 18th June.

You can find full details of this special event and how you can get involved here: #WearPurpleForJIA – JIA


Connect with our Guest

You can find Suruthi on Instagram here: @fightrheumatoidarthritis


Recommended Reading

Joel vs Arthritis – The wider impact of Juvenile Arthritis

Joel vs Arthritis – Juvenile arthritis and me

Joel vs Arthritis – Pain and Parenting; when the happiest year of your life becomes the hardest


Links and More Info

#WearPurpleForJIA – JIA

JIA-at-NRAS | Supporting children and families affected by juvenile arthritis

NRAS | Rheumatoid arthritis charity


If you’ve enjoyed this podcast, please don’t forget to subscribe on whatever platform you are listening to this on, leave a review and send me your comments and feedback via email.

It helps massively and allows me to improve future content and episodes.

You can read hundreds of articles about chronic illness, awareness, and how I manage pain, parenting and my mental health alongside my arthritis here.

Get in touch with Joel at:

Twitter: @joelvsarthritis
Facebook: facebook.com/joelvsarthritis
Instagram: @joelvsarthritis
Medium: @joelvsarthritis
Website: https://joelvsarthritis.co.uk

Facebook private support groups: Arthritis and Autoimmune Support Group & Chronic Illness Dads


Pain.Company

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