I grew up very healthy. I rarely got colds, and don’t ever really remember having to take medication (other than Calpol. And BOY did we all love Calpol). My young childhood was in every way fantastic. It never crossed my mind that long term health problems could arise in the future, because why would it have?
I apologise in advance that this post will likely be a long one!
When I was around 14, I started to notice a pain in my finger, but it was such a small problem that I ignored it for the longest time. It was persistent enough, but eventually just became a part of my day to day life, and I never thought about it as more than an inconvenience. Not too long after that, I noticed an intermittent pain in my right knee that would come and go. I would only experience it a couple of times a month, so I was not worried about that, but it occurred when I walked or stood for too long (I noticed it without fail at concerts). It was only when these issues got worse and would not budge that I considered getting them looked at.
I definitely asked myself whether I did need to go to the doctor about this, I rarely visited and the embarrassment of going over something so petty was genuine. Surely I’d get laughed out the surgery? When I did go to get them looked at, it took a long time to figure out what was happening and I wasn’t even sure it was worth it, as before this I’d put it down to an ice skating fall I had experienced a few years prior. I had scans, blood tests and physio, and ultimately I was diagnosed with hypermobility.
Now for a lot of people, hypermobility is a very serious and debilitating illness. I was lucky, as for me the extent of the problems it caused me was a single painful finger and knee (alongside being scarily flexible). At this point I was around 16, just at the tail end of secondary school.
Skip to February 2017 (making this my 2 year anniversary since diagnosis! My illniversary, if you will…?). The pain had spread throughout my whole left hand – except my thumb – and I’d very recently been referred to my current rheumatologist after an unsuccessful try at physio. I had started developing symptoms such as swelling, and others that I had no idea were related, like fatigue. Dramatic as it sounds, I desperately hoped that something would indeed be found so I could feel a little more control over whatever was happening.
I actually don’t remember exactly what tests were run to diagnose me, but when I received the letter stating the diagnosis, it definitely wasn’t something I’d been prepared for.
Seronegative Inflammatory Polyarthritis
A diagnosis of arthritis at 19 years old definitely wasn’t what 14 year old Kristie with a niggling pain in her finger had expected.
I was quickly put onto Hydroxychloroquine (this name definitely took me a while to remember), a medication that falls into the DMARD (disease-modifying anti-rheumatic drugs) category to regulate my body’s immune system and control pain – and it is a medication I’m still on now.
At the same time, I was also prescribed Prednisolone. I ended up being on this medication for around 5 months. It is a steroid, one that I’d been prescribed before the previous year for my skin.
When I’d taken it the previous year, it was a month course. I can only describe it as the worst month of my life. I would take the tablets (at a starting dose of 25mg) midday every day, and like clockwork around 45 minutes to an hour later, I’d become dizzy, anxious, nauseous, and robotic for the rest of the day. The only way I can describe the feeling is that it was as though I was outside of my body in a dream-like state watching myself floating through life for a month. September 2016 was not my best look. Luckily this time around for my joints, I’d be at a maintenance dose of 15mg for around 5 months before tapering off them, and the side effects were nowhere near as debilitating and it seemed to be a miracle drug in terms of reducing swelling and pain. But, I digress.
Upon coming off of Prednisolone, I found my joints actually stayed in that ‘normal’ state. They looked and felt like the hands of a regular young person. However it didn’t last long, and they once again became arthritic (saying that, my left hand is always worse, only my right-hand thumb is affected). My rheumatologist then experimented with Sulphasalazine. The side effects were real and I was off them within a month. We’re now at around December 2017.
In February of 2018 – a year ago to the day as of the day I’m writing this (you can never have too many anniversaries in one post) – I began my new job. I felt genuine worries about how I would handle it, but as it turned out, the 3 managers (at the two different locations I’ve worked at) I’ve had during my time with the company have all been very supportive. I even cried in the arms of one of them about it. Nothing says happy Tuesday like hugging your crying employee in the staff room!
By the time April/May of 2018 rolled around, the pain was all over my body. Namely my elbows, fingers, neck and less intensely in my knees.
After being put back on a 3 month 15mg course of steroids again in May 2018 (this time in the hopes that it would help both my skin and my joints in one), I went for an incredible holiday in July of that same year to my favourite place in the world, Florida, with my incredible family. Upon returning back however, I’d received another letter. 2 months prior I’d had DEXA scan done in direct response to being prescribed my 3rd course of steroids. Steroids – alongside many other long term effects if taken for too long – can weaken your bones, so this scan just keeps an eye out for any potential harm the steroids may cause to bones.
What is better than having just one disease almost every 85-year-old in the world has at 20 years old? Having two! Namely, Osteoporosis. Potentially caused by the magical steroids that had kept my joints so at bay while on them. Talk about a double-edged sword.
“Osteoporosis is a condition that weakens bones, making them fragile and more likely to break.” – NHS online (https://www.nhs.uk/conditions/osteoporosis/)
I was put on Calcichew tablets twice a day and Alendronic Acid to take once a week. The latter made me almost throw up for 2 weeks, then throw up on the 3rd, so that was stopped. Luckily, osteoporosis is a disease which is also largely dependant on the right diet alongside (or in some cases instead of) medication to control it, and to an extent, reverse it back to osteopenia (the very beginning stages of osteoporosis). Luckily for me, it causes no pain or discomfort.
Getting this diagnosis was quite difficult emotionally for me, as I already felt a degree of embarrassment from having one ‘old person’ disease. Getting another was a bit of a kick in the gut. Thankfully, it doesn’t quite have the same effect on my day to day life as arthritis.
An Old Persons Disease
I can’t say that at 19 a diagnosis of Arthritis was forefront of my mind, and quite honestly I didn’t know it was something you could get at a young age. Others I tell tend to have a similar reaction of almost disbelief. It’s absolutely something – in my mind – that I completely do not and should not talk about. The only people who I will ever talk about pain for more than a passing moment to is my boyfriend and family, and even then I despise hearing or saying the word ‘Arthritis’. I don’t know if it’s the stigma it holds for me, or just the not wanting to overshare or bore people with it, but unless it’s stopping me physically from being able to do something then most of the time you will never hear about it from me even when it’s at it’s worst. I can safely say it has happened a lot.
There is also an element of feeling as though I am an imposter in my own pain. As with any invisible illness, I can never know how the pain I go through compares to the next person with the same disease. It definitely makes the topic being bought up uncomfortable for me.
I think an overarching struggle in having a chronic/invisible illness is the difficulty when it comes to talking about it. But – as with most things – better out than in (lol, sorry).
Onwards and Upwards
At the moment, the worst pain I get is during the night and when I wake up. I currently take Celecoxib and Hydroxychloroquine for pain relief and as an anti-inflammatory, Methotrexate injections (they’re self-administered once per week) and folic acid tablets to offset the Methotrexate, alongside a few supplements/other medications to help my osteoporosis and anaemia.
I worry for the future, although I try not to. I think, like many others, the future feels so far away that I am very able to keep it out of my mind. Although I know that realistically, the truth is that this is likely permanent and will only worsen with age.
The good thing is I’m very aware that there will be periods of time when I feel better – like with anything, some days are better than others – and when it’s in it’s ‘remission’ stages, it’ll be a lot easier to deal with.
I apologise that this post is long and is a bit all over the place, but if you did make it to the end, then thank you! I wasn’t sure on what tone to go with when writing this and it was a bit of a hard one to finish. I’d love to know if anyone goes through/has gone through something similar and to hear you’re experience?
Hope to see you on the next post, I promise it’ll be on a more positive note!