It’s 4 in the morning and I have been awake for hours in agony.
I have tossed and turned, trying to get back to sleep. My legs are throbbing, my joints feel as though a knife is trapped under my skin, twisting and scraping my bones. Any movement I make sends a searing pain so agonising through my body that it makes it hard to breathe.
I can’t stop crying.
I do not want this life anymore.
This, to some extent, has been my life for the last 27 years. This is what living with arthritis looks like for me.
For the most part, I have been incredibly lucky. I was officially diagnosed with Juvenile Idiopathic Arthritis at the age of 2, when I started and then immediately stopped walking. To some extent, this was a blessing in disguise. Realistically, how many of you can reference major moments in your life at 2-years-old? The passing of time occasionally has its benefits.
From what I’ve heard from others at this point in my life, the experience I had seemed quite traumatising. For my parents, I can imagine that having a child like me felt devastating at times. For my doctors, having a screaming 2-year-old come into the hospital on a regular basis was probably nothing short of torture. But luckily for me, I don’t remember this period of my life at all.
I have endured many ups and downs with my arthritis throughout my life. I could go for years with no real pain, even at one point going into remission (spoiler alert, it did not last long). But for the most part, arthritis has been a tormenting demon in my life, one that won’t seem to leave. It has caused me sleepless nights, weight fluctuation and chronic fatigue. I’ve been wheelchair-bound, I’ve been dependent on crutches, I’ve been hospitalised and injected and medicated until I rattled and I even had a hip replacement aged 22.
But as I think about and reflect on everything that has happened with my arthritis, even as I think about the pain and the frustration that living with a chronic illness brings, I’ve never truly had an issue with being ill. I’ve never worried about the fact I am ‘different’, or that I have to be careful unlike other people, or that my illness will never go away.
Some may think that life has been cruel to me. I have seen pitying eyes and saddened faces as I tell people my story. In my lowest moments with arthritis, particularly just before my hip replacement and in 2020 when I became wheelchair-bound, it often felt impossible to find hope. But the support of my family and friends was immeasurable and with it, I overcame my darkest periods of time.
Whilst living with arthritis, I have also managed to achieve great things. Last year in 2021, whilst I was reliant on crutches to walk, I successfully raised over £1,000 for Versus Arthritis by walking 2,500 steps a day over the course of a month. Had it not been for my illness, I may never have been aware of such a supportive charity, one that is extremely close to my heart and helps many people with arthritis.
And there are always good days. On those days, the ones where I can walk without a limp, where I can walk without a crutch or a noticeable illness; it feels liberating to blend into the world.
I know there are others like myself who will understand just how trying living with arthritis can be. For anyone who is struggling with arthritis, know that there is always hope. There will be good days. People won’t look at you and only see your illness. They will simply see a person walking through the world like everyone else, wondering what life will bring next.
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