4 Things I Wish I Could Tell Newly Diagnosed Me About Life with Psoriatic Arthritis
Receiving an official diagnosis of psoriatic arthritis, like many other psoriatic arthritis patients, I had no idea what the rest of my life would look like.
Here I am, twenty-one years later...
The strange thing is, at that time of both my psoriasis and psoriatic arthritis diagnoses, I wasn’t very concerned. And here I am, twenty-one years later, wishing I could go back in time to have a serious conversation with the newly diagnosed me.
If I could go back in time, I would have a long list of things to discuss with newly diagnosed me. And the following top my list.
A lesson breakdown...
The first is, don’t always believe the doctor. When he says we could live a “normal” life just by treating PsA symptoms. At the time of my diagnosis, there were no treatments available for psoriatic arthritis.
My rheumatologist’s enthusiasm about how treating a few symptoms and providing pain relief would allow me to live like I did before was contagious.
Secondly, I would warn newly diagnosed me that the pain will worsen and new areas will be severely affected.
Next up would be to encourage newly diagnosed me to utilize mobility aids sooner rather than later. Mobility aids prevent injuries when we struggle to walk, but only if we use them. Waiting until we fall and break a bone or suffer another injury only increases our pain and downtime.
The impact of multiple chronic conditions
And last but not least, don’t let other chronic illnesses get in the way of your psoriatic arthritis care. I was diagnosed with not one but four severe chronic conditions within three years.
Psoriasis was my first, followed by fibromyalgia, psoriatic arthritis, and endometriosis.
It was the latter that consumed all of my attention. Endometriosis was and is still my most debilitating and painful condition. Unfortunately, the issues that endometriosis created took over my life.
I couldn’t concentrate on any other illness or disease when it was flaring. And I needed the reprieves to catch my breath. But as physically, emotionally, and financially draining as living with endometriosis was, I wish newly diagnosed me would have had the insight to know the importance of regularly monitoring psoriatic arthritis.
Would my life be different?
Would knowing what I know now have changed my life with psoriatic arthritis today? Yes, no, maybe so? The truth is we will never know.
There’s a chance that my psoriatic disease wouldn’t have progressed as far as it has in the past twenty-one years. My body may have responded well to treatments once they became available. Then again, I could have been allergic to them or suffered from the worst side effects as I have with medications for other illnesses.
I believe having an idea of what to expect would have made me more proactive rather than reactive regarding mobility and severity.
Psoriatic disease is a big deal
Being led to believe that my life would not change drastically or that my condition would not worsen was why I didn’t take it as seriously as I should have. Psoriatic disease is a big deal. Doctors who do not drive this point home do patients a huge disservice.
Please, share something you wish you could go back in time to tell newly diagnosed you!
Were you ever misdiagnosed before being diagnosed with psoriatic arthritis (PsA)?