A Psoriatic Arthritis Story: The Horror and the Tragedy
It has been some time since I wrote something for this wonderful community. I could say it was because I was busy with several awareness campaigns, advocacy work, and navigating my way through parenthood as my angelic boy becomes a boundary-pushing toddler!
All of which is true to some extent. Or, I could tell you the real reason I stopped writing for a few months. Something many of us are unfortunately all too familiar with: grief — and the never-ending cycle of loss while living with a chronic illness like psoriatic arthritis.
The haunted house
If you've ever read anything I've written previously, you'll know I only have one gear. It's full gas or nothing at all. As a result, I've never been any good at filtering my view of the world, especially when it comes to my words.
This means that you tend to have to hold on tight and live with me for a few moments when I write. It's what all good storytellers do, after all. But given this is my reality and not a ghost story, and I suspect closely mirrors your experience on some days, what that place looks like varies significantly with a chronic illness.
On those days when that story takes place in a haunted house, I have to think carefully about who I bring in with me on that journey as, ultimately, I aim to raise awareness and inspire - I never want to be somebody's trigger. So now I am out of that dark place, conquered the demons once more, I have two choices.
I move on like nothing's happened, or I talk about it once I am in a safer place so that others may feel less alone and someone might learn something from it. Perhaps I will learn something from it. In this, my first series for psoratic-arthritis.com, I will discuss my experience, exploring some of the more unspoken elements of life with arthritis.
It's all about resilience
I said to somebody recently that the difference between managing my condition and not managing it is resilience. When everything is going well, the pain is manageable. I'm in work, have fewer worries, then a blip is just that, a blip.
I might wake one morning with a new ache, have a fall, or find myself managing more fatigue than usual - but when things are in their rightful place, that's ok.
However, throw those same changes into the mix when I am getting only a handful of hours sleep a night, or when I'm signed off work and worrying about paying the bills, then that blip feels like an absolute mountain to climb. Soon, things start to unravel.
People wrongly think an arthritis flare is when your pain spikes or something gets 'a bit sore and red', as somebody so casually said to me once. For me, a flare is rarely about the pain itself, especially when I've experienced so many since childhood, but rather that horrible feeling of not knowing what it will destroy and for just how long.
How many broken pieces of my life will I have to find the energy to rebuild afterward - if it can be rebuilt at all?
To anyone reading this who hasn't had this experience, I'm not simply talking about the obvious things of losing your job or not being able to go on that vacation you had planned. Oh no, arthritis cuts far more profound than that in this tragic tale.
The ongoing suffering
Instead, I'm talking damaged mental health, depression, fractured relationships with those you hold the closest, loss of confidence to the point you don't know who you are anymore, the hopelessness of being a passenger in your own life - grief.
Raw, recurring, brutal suffering, that just as you feel like you have patched up your world from the last flare, the next is ready and waiting, needle in hand, to pick away once again at the tattered seams. And, it's exhausting. This tragic tale is to be continued...
Stay tuned for the next installment of this series, where I talk more about the mental health impact of our disease and how changes, such as embracing pain management therapy, helped me deal with the cycles of grief that accompany flares.
To read more of Joel's articles, check out his author archive by clicking here.
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