Coping with the Unknown
The science of psoriatic arthritis has come a long way, especially in recent years. There have been amazing advancements in understanding how the disease progresses and how we can more effectively fight back. There have been great discoveries in how what we eat impacts how our bodies react. There is even research on how to incorporate the best of everything to give us the best chance of halting the progress of our psoriatic arthritis. And yet, with all of this information, there is still so much that we don’t know about the disease itself, and more importantly, how it continues to impact our lives every day. Coping with the unknown is difficult and unpredictable.
An unknown future
One of the things I have the most difficulty coping with is my fear of the future. And yes, before you remind me, I know that there is very little (if anything) I can do about it. Yet, that doesn’t stop me from being concerned. What if in the future I no longer respond to biologics? What if my insurance changes? How will my life change if I can no longer work?
All of these things, these future worries, keep me up late into the night, even if staying awake from pain doesn’t. We can’t do anything about the future, I know this. But I never claimed to be a particularly rational person, nor does that keep my anxiety gremlins from whispering the unsettling thoughts in my ears on an endless loop.
Living with the unpredictable side effects of psoriatic arthritis
Everyone knows that no matter which way we choose to manage our psoriatic arthritis, there will always be side effects. However, one of the downsides is you can never know for sure what those side effects are going to be until you start it. Not to mention the fact that you can be on medication for, let’s say, 6 months with no issues at all. Then suddenly, wham! You become side effect central. Will it happen? When will it happen? Will I get lucky this time? Who knows! You just roll the dice each day and see what might happen.
Coping with the unknown origin
I hate not knowing how my body will feel each day. Yes, I’ve learned to live with that. But what really bothers me about the unknown is that I have no idea how I developed my psoriatic arthritis. I don’t know if an event “triggered” it. I don’t know if I had a particular strain of strep throat or if all the stars just aligned against me. And many people would argue that it doesn’t matter how I got it, simply that I have it. But it’s that not knowing that drives me nuts! Yes, I know that many of you will tell me that at this point, it doesn’t matter because it simply is what it is.
But what I really thought is that if I can figure out why, how, and when it started then I can protect others, namely my children, from this disease. And yet, even then I wasn’t able to help my daughter who has already developed it at the young age of 7. And here I sit, helpless because I don’t know the origin of my, or worse, her psoriatic arthritis.
Coping with the unknown future of psoriatic arthritis
I’m not sure what it is about the unknown that gives me such heeby-jeebies (yes, that’s a thing!). Perhaps it is the more “controlling” nature of my personality. Or it is my need to always be informed and plan for any possible contingency. I don’t know. But what I do know, is that all of life is filled with the land of the unknown, life with psoriatic arthritis is no different.
Do you have a sleep disorder (eg. insomnia, sleep apnea, RLS) in addition to your PsA?