Ask The Advocate: Fears of Progressive PsA
Last updated: April 2022
Those who live with psoriatic arthritis are constantly having to prove that their pain and fatigue are real. It's a thankless and valiant fight that's partnered with all the emotional challenges of maintaining an invisible illness.
While we don't have a solution, we do offer support. Those who live with this condition provide a community of collective understanding. There's nothing to prove here - we get it. Do you know who else gets it? Those who advocate - including our advocates here at Psoriatic-Arthritis.com.
Insight into the healthcare provider relationship
Throughout this month, we'll be publishing an Ask The Advocate article series. This is our way to raise awareness of psoriatic disease and validate those who are living it daily. We've talked about HCP relationship management and the impact on daily life.
We all know psoriatic arthritis impacts everyone differently - from central pain locations to managing the emotional toll. We asked Joel, Elizabeth, and Porscha a loaded question, insight into how they research, learn and cope with the thoughts of progressing PsA. Let's see what they've decided to share.
Learning to adapt to PsA progression
Joel Nelson: I’m probably slightly different here in that I’ve become more numb to progression and the changing landscape of my condition, as having symptoms from the age of 10, it’s kind of all I know. But, of course, it doesn’t mean it doesn’t absolutely suck, and I don’t grieve what I used to be able to do because I do, probably far too often! But I’ve learned to adapt and compartmentalize those moments.
It’s essential to be aware of your changes. Allow yourself that daily check-in when you swing your legs out of bed each morning. What hurts, what doesn’t, what’s changed from yesterday, if so, why? Did you do too much? Is there a reason that’s acceptable etc.?
Have an honest conversation with yourself. If you overdid it on a good day, accept it and learn from it. It’s so easy to get angry with the changes or live a ‘boom and bust’ lifestyle on the good and bad days, but it’s like putting the incline up on the treadmill when you’re already suffering. It just makes living with the condition harder. Be aware, be honest, learn from experience and in time, you will accept.
Taking steps to better health
Elizabeth Medeiros: Being so young, the idea of my PsA progressing terrifies me. If it's so bad now, what in the world will it look like later? There are times that my anxiety about it can keep me up at night, even though that is awful for my health too.
But worrying is fruitless, so I try to be aware of my health and take steps for better health. I do my best to keep up with doctors and follow their recommendations for at-home treatment. I also try not to let issues sit for too long before mentioning them to my doctor; treating problems early has the best long-term outcome.
Some issues can't be fixed easily if you let them sit for too long, especially when it comes to things like bone erosion or eye inflammation. Even though it's scary, it's best to be aggressive early on.
Balancing research and future worries
Porscha Simmons: I do a lot of research about PsA and about spondyloarthritis in general. I do worry about progression. Even now, at just two years diagnosed, I have some progression and am dealing with degenerative disc disease and some other issues that sometimes come in tandem with PsA.
I try to balance my research and learning with also making sure that I’m not too preoccupied with the future. I feel safe with knowing all the information or as much as I can get but it’s key that I don’t overwhelm myself. I have an anxiety diagnosis that I’ve had since well before I had PsA and while it’s well-controlled I have to make sure that I don’t spiral.
I do talk to my doctors about progression but often I'll try to focus on a specific question or piece of advice as opposed to the old dread about what may happen in the future. Even when I’m anxious about disease progression I try to look at what I can control and say how can I rise to meet this challenge or even what type of help do I need with this challenge.
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