No, I Am Not a Doctor. I Just Live With Psoriatic Arthritis

I have had psoriasis for over 50 years and psoriatic arthritis for the past 35 years. In the last 15 years, I have considered myself an expert by experience only.

Gaining the knowledge of psoriatic arthritis

Psoriasis is a chronic skin condition caused by an overactive immune system. Symptoms include flaking, inflammation and thick scales for some of us.  Psoriatic arthritis symptoms include inflammation that causes pain and stiffness in the joints. Some people get psoriasis which is itchy and painful.

This disease has taught me how to live and how to manage my condition.  I have learned to stay on top of the medications and go to the doctor when necessary. Over the years I have had to have several different procedures and have learned how to take better care of myself.

What experience with psoriatic arthritis has taught me

I have been taking medication since the age of 5. Being around drugs my whole life was a driving influence to become a full-time patient advocate and support other patients just like me. For the past ten years or so, I consider myself a driving force in my community. I try to attend as many seminars and conferences as I can, to learn all I can from others.

There are 5 different types of psoriasis that I know about; erythrodermic, plaque, guttate, inverse, and pustular. Believe it or not, I develop most of these all in one week. This is what makes me so unique. So many different things have happened to me that have baffled doctors for years.

Talking with doctors about psoriatic arthritis

When I explain to some doctors that I am an advocate for psoriasis and psoriatic arthritis, some become leery of me. But then I explain that I have spoken in front of 200 doctors at the Dermatology Association and spoke at the FDA; then their heads begin to turn.

They have questions to ask me. There is still so much they don’t get about our disease.

I believe that open learning is endless. The one thing that sticks in my mind is that most people are happy to meet someone like them. Not everyone understands what we go through. I am so humbled when someone thanks me for being such a great advocate for them.  I feel so inspired that I can help others.

Leveraging my experience with psoriatic arthritis

It’s the best feeling ever when a doctor asks my opinion on something. I feel empowered. Not all doctors feel this way. They have their medical degrees so it seems they think of us as patients who can't tell them anything. A doctor told a friend of mine that some things should be left to trained medical professionals.

I know we don’t have medical degrees, but I have learned so much over the years. I can apply my experience to the life that I live now. We are just as knowledgeable about what is going within our bodies. We know what works for us, the side effects, what’s not working, and we know our bodies.

The bottom line for me is unless you lived with a chronic illness or not, we are all different and all have different challenges. Our body changes as much as our mood does. We don’t know what will cause a flare to happen immediately.

Considering myself a psoriatic arthritis expert

I have learned over the past 55 years of having this disease that I understand my condition better than any doctor.  Not to be arrogant, but knowing all about me helps effectively connect with my doctor.

When we don’t know medical terminology, we are treated like we are not very smart. When we show a little intelligence; we are named an annoying patient who knows more than the doctor.

Doctors can learn a lot from us experts. They would get a better understanding of the patient experience and what we are met with daily. As a patient advocate, I know that it’s because of healthcare providers that patients like me continue to thrive. I wish that more doctors would listen to us patients. I promise it's not in our head.