My Expectations of Living Well with Psoriatic Arthritis
Once upon a time, my friends, family, and I had the same idea of what living well with psoriatic arthritis should look like. We all agreed that anything less than how I was living before my diagnosis was unacceptable. However, after many years of failing to achieve the said status of “living well”, our expectations grew further apart.
Explaining the differences in expectations
Even though this year will mark the 18th anniversary of my diagnosis, there are still friends and family who consider my life unworthy of respect or praise because how I live it does not fit their expectations of living well. Here are a few examples of how our expectations differ.
Friends and family expect psoriatic treatments to rid my body of all pain and symptoms. Experiencing a flare of any severity is a sign of that treatment failing.
I know better than to expect a treatment of any kind to eliminate the pain and symptoms I experience from psoriatic arthritis. For me, living well with psoriatic arthritis means having a treatment that reduces the level and severity of my flares. Flares are always possible, even with the best of treatments.
To live well by friends and family standards, I would have to function like I did before chronic pain entered my life. That is to have no need for mobility aids or assistance of any kind.
While it is nice when my body cooperates, expecting a 52-year-old body that has multiple chronic illnesses and damage from two botched surgeries to perform as it did in her 20’s is both unrealistic and ludicrous. My definition of living well includes adapting to new issues, embracing tools and resources that make living with my chronic illness easier, and finding ways to pursue my passions that do not increase my pain.
Due to complications from all my chronic illnesses, I have had to use a wheelchair for the past year. To regain some of my independence I purchased a power wheelchair. While sharing how it has improved my life, a relative said “and when you no longer need it you can sell it”! Once again, I am reminded that not everyone accepts that I will never be the same.
Mental health expectations
Anyone who does not live with a painful chronic illness cannot possibly understand the emotional impact it has on our lives. With that said, there are some who think I should be in a constant state of depression. It is their opinion that no one in their right mind could find joy in living with the pain that I do.
I am so thankful that we disagree on this point. While it is true that living with psoriatic arthritis can be depressing and maddening, my body’s lack of ability does not define me. I have many outlets, hobbies, and passions that bring joy and purpose into my life.
How have your expectations changed? Do your friends and family share your expectations?
Do you have a sleep disorder (eg. insomnia, sleep apnea, RLS) in addition to your PsA?