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Are You a Patient Advocate or a Patient Expert?

I have had psoriasis for 55 years and psoriatic arthritis for 35 years. I have talked to countless medical professionals over the years all who have asked me numerous questions and remarks about my disease. I have had doctors asked me for insight on what treatments I thought would work best for my conditions. Recently, I attended a dermatology association meeting and was asked lots of questions about my experience living with this disease for so many years.

All this experience and insight led me to the question, am I an expert now or am I an advocate?

What is a patient advocate?

I love being an advocate and to me, an advocate is someone who speaks for others. I have educated myself enough to be able to speak about my disease. I want to speak for people who can’t speak for themselves. There are some people who don’t have a voice. I can relate, that used to be me. I considered myself a wallflower for 40 years.

But today, I am that person who will stand up for my community even if I must stand alone. I’m not afraid to speak about the pink elephant in the room; such as adversity or mental health. I want to encourage others and build them up to do the same. I’m very humble when it comes to my work as an advocate. I have met so many people who have come before me and have led me on this journey. My goal is to get the job done and wait to see what is at the finish line.

What is a patient expert?

I know that I’m not in my mind, but my disease has taken on a life of its own. Yes, I have studied my disease and hold the confidence and knowledge to make an informed decision about my health. Would I want to take on that role of telling someone else what was good for them? I wouldn’t. So on that note, I can firmly say I am not an expert.

For over 55 years I have lived with this disease and obtained knowledge from different sources while talking to more doctors than I can remember. I know I don’t have the expertise to give medical information to anyone else, but I can be an expert on my own condition.

Advocate or expert? We all have one goal

An advocate is someone who can make quick decisions, exude self-confidence and have the ability to get people to trust them. I like being an advocate for people who are just like me. I know there are some advocates who go to doctor appointments with patients and help them with medications. We also have advocates who can be caseworkers or a go-between with family members. There are so many types of advocates and I think all of us do things in different ways.

Being an advocate is very important to me. I want to see changes in our healthcare and our communities. I go to Capitol Hill every year to tell my story. They are waiting to hear from people like us who care and advocate for others. I was told that these meetings carry a lot of weight and influence policy decisions. I feel empowered and persuasive getting my message and story across.

Our main goal is to improve health care and find a cure for our disease. It doesn’t matter if you’re an expert or an advocate. We are all out to improve the lives of others.

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