Things I Wish People Understood About Psoriatic Arthritis
I don’t expect everyone I meet to research my chronic illnesses. They don’t need to become a scholar of psoriatic diseases. However, it would be nice if they would take the time to understand five simple concepts of what it is like to live with psoriatic arthritis and psoriasis.
Living with an invisible illness
Whether my lesions are not visible or my skin is clear for a time, I have not been cured. These are incurable autoimmune diseases that have many symptoms; the rash is just one of them.
Having visible skin lesions is not the only symptom of psoriasis or psoriatic arthritis. I presented other symptoms long before it decided to cover my body from head to toe. Later when my rashes were minimized to only affecting areas that weren’t visible to the general public, it was assumed that I was cured.
There is no cure
Who knew that having an incurable, but not terminal illness would create such confusion? Yet, those who don’t have it or aren’t close with someone who does appear to have a hard time understanding that these diseases will be with me for the rest of my life.
There is nothing my doctor can prescribe to completely stop my disease. Visiting the Dead Sea won’t cure me either.
Treatment is not easy
I have had quite a few jobs in my lifetime, but nothing was as difficult as learning how to live with my chronic illnesses. Living with chronic pain and symptoms that would have the average person running to the emergency room requires daily attention.
Following a treatment protocol is just one task. You would think this would be the easiest, but when knowing that at best it is just slowing the progression and not healing the disease messes with your head.
My body is always a consideration
I spend every day and every moment of each day analyzing how my body feels. I find ways to work around pain and to reduce it as much possible. I pad my schedule with days to recover from major outings and have to get real about what I am really able to do.
There isn’t a plan or decision that is made without having to take my chronic illnesses into consideration. I don’t just buy a car based on what I can afford and what luxuries I desire, nope, I need one that doesn’t increase my pain while driving or riding in it. It also needs to be able to haul around my mobility aids.
The impact on mental health
Every day is spent fighting not just for my physical health, but also for my mental health. Depression and anxiety often stem from the inability to do things like I used to. My disability creates feelings of unworthiness and uselessness. Having to constantly justify my need to do things differently is exhausting and has led to periods of isolation for no other reason that I just need a break.
While there are many more things that I wish others understood, these offer enough information to convey that just because a disease isn’t terminal or always visible it doesn’t mean that living with them is easy. In fact, it is a constant battle, one that will not end until I die.
Do you have a sleep disorder (eg. insomnia, sleep apnea, RLS) in addition to your PsA?