Psoriatic Arthritis Woes: What I Wish My Rheumatologist Knew

My PsA journey is as unique as my fingerprint and certainly not a one-size-fits-all. This pain is not all in my head - and I have to explain it often. Finding people who exercise compassion, empathy and an attempt to understand is far and few between. This is especially true of my rheumatologist.

I mean, I could write a book on all the things I want my rheumatologist to know. For the last 2 years, my appointments have been a nightmare.

What does my psoriatic care look like?

I am on Medicaid. I cannot see a private rheumatologist because none of them in the whole state of Louisiana will accept Medicaid as payment for services. Yes, you read that correctly — the entire state. The same holds true for dermatologist which I should see for my psoriasis.

To receive care, I must go to a teaching hospital to get care for my psoriatic disease. It is the rheumatology department that I go to for both conditions because this hospital doesn’t even have a dermatologist on staff. That means that I am treated mainly by a future rheumatologist.

Sometimes you just want an experienced doctor who has patient bedside manner, that asks the right questions, and genuinely want to know how you're doing. I can't find that at this hospital.

I'm often left feeling frustrated!

I know that I should be content that I'm getting treatment at all - and I understand that sentiment. Alas, I am not. Don’t get me wrong, interns need to have hands on experience before going into private practice. However, it does not provide any kind of adequate treatment when it comes to treating these conditions.

Many times, I feel more like I am the doctor instead of the patient. Thankfully I do know quite a bit about psoriasis but not so much about psoriatic arthritis. That should be their domain since they are going to one day be a rheumatologist.

I find myself telling them more about what I know than them telling me about arthritis and the damage that is happening in my body.

What do I want my doctor to know?

In a nutshell, I am constantly having my own advocacy tested as well as my knowledge on these conditions. Sometimes all these interns want to do is focus on my psoriasis - it's important to me that both my conditions are addressed, researched and treated.

Now you know my experiences, allow me to gripe about what I wish these soon-to-doctors knew.

Why shouldn't they use the pain scale?

The pain chart is a total waste of time. I can give you a number of my current pain level between 1 and 10 since 10 is the highest but given the fact that we live in pain daily 10 is not a sufficient number to detail that level of pain. My level on any given day is above 10. My answer “well about a 3.”

What can they learn from us?

Trust me, don't misdiagnose me. While I understand you must treat me for both conditions, please take the time to learn something about psoriasis since that is the case. I do not need you to tell me that I never had psoriasis, that I have vitiligo because you see the hyperpigmentation left on my skin.

Why should they listen to us first?

Listening is key! Take the time to truly listen to what I am telling you. If I have to get to a point of telling you to go get the doctor on duty you will never treat others with psoriatic arthritis in the proper way either.

Do you have anything you would like to add?