Be yourself; Everyone else is already taken.

— Oscar Wilde.

So this is what inspired me to start a blog and share my story on social media. 2019 has been rough for me but in the last month, I started to share my story, firstly after I was encouraged to take part in VersusArthritis’ #painnofilter campaign and more recently when I finally got some good news from the Biologics team at the hospital.

I got so many positive reactions, comments, kind words of encouragement that I thought it seemed a waste to end my recent journey there. Could I not help other people in my position, especially when for so long I thought my situation was unique…until I started facing my fears and talking publically about my conditions and realised that there’s a whole group of people like me, especially who have had arthritis or autoimmune conditions from a young age and perhaps don’t feel they have an outlet or forum to discuss these things; I certainly haven’t since I was 11 and its isolating and depressing.

The below was posted on my personal Facebook on 5th November 2019:

So after 11 long and painful months of fighting, appealing, writing letters and pleading I finally got my treatment change decision reversed back to what had worked for years and didn’t need to change if it wasn’t for CCG’s trying to cut costs.

Pretty sure the cost of painkillers, anti inflammatories, joint injections, physio, doctors appointments, days off work etc. far outweighed their short-sighted decision, not to mention the lies we were told when we signed the paperwork and the first question we all asked was ‘if it doesn’t work, can we change back?’ to which we were quickly reassured ‘yes’…yet it is almost 11 months since my first injection, since I wasn’t able to play sport for months, wasn’t able to sleep, stuck on a constant supply of painkillers as doctors answer to the spiralling issues, since I lost touch with my mates, put on weight and generally had my confidence destroyed… All because of a change from a treatment that was working perfectly for years, had given me a new lease of life, put my conditions into remission and enabled me to start a family to something that was cheaper. To make this change at the same time as Dylan arrived was especially cruel and I thank Anita Nelson for supporting me, keeping me sain and putting up with me in my darkest days through months of pain.

Huge thank you to National Ankylosing Spondylitis Society, Versus Arthritis, the amazing Biologics nurses at Norfolk and Norwich University Hospitals NHS Foundation Trust for always championing my cause/situation and doing everything they could for me in a difficult situation (especially Marianne!) and finally Dr Abbot at the Humbleyard Practice…I don’t know what she said in her letter to my consultants but it clearly got us over the line and I am forever in your debt. ❤

It’s hard for me to share this sort of thing but this shouldn’t have happened in today’s day and age, especially when the treatment I was receiving was working so well…don’t fix what isn’t broken. I not only share this as an explanation as to where the old Joel went in 2019 but in the hope that it helps someone else in my position, desperately trying to reverse a decision that they never had a say in. Therefore, feel free to share the hell out of this…at the very least my sincere thanks might reach those who helped me.

#nhs #biologics #arthritis #ankylosingspondylitis #psoriasis #psoraticarthritis #immunesystemdisorders #treatment #nhscuts #ccg #nnuh

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Arthritis and Psoriasis Patient Advocate, Writer And Consultant. Owner Of The Pain Company.

I share my story of Juvenile Idiopathic Arthritis to raise awareness and specialise in pain, parenting (with disability) and the mental health impact of living with chronic illness. I write and campaign for leading charities and organisations. In addition, I provide patient experience consultancy for both charities and global healthcare companies.

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