How I Became a Patient Advocate

Twenty years ago, when I was first diagnosed with a lifelong illness, I would never have imagined what that diagnose would mean and how it would change my life. All a person can see at the time is the overwhelming feeling of their life imploding before their very eyes. That is how it was for me. I truly felt like my life was over. As the condition progressed, I felt that more and more. As if the way I was feeling was not bad enough I had to endure peoples’ comments and stares when I would go out in public. Those events put my mental health in a downhill spiral. There was one event in particular that really punched me in the gut.

My first biologic

Ten years into my journey I got put on my first biologic. Being 80% covered in plaque psoriasis I thought it would take care of the condition and I would not have to deal with it anymore. At that time, I depended fully on the doctors to tell me how medicines would go. Six months into taking the biologic it had only cleared my hands. I was grateful for that, but I wanted it all gone. It came time for my checkup. The doctor comes in and says we need to talk. In that visit I had to decide on whether to keep taking the biologic or move on to something else. What a punch in the gut that was. Once again, I truly felt like my life was over. That feeling was so strong that I told my husband that if he wanted out of the marriage, I would let him out.

How I started to become a patient advocate

I was so depressed for months. My husband kept telling me that he married me knowing I had psoriasis, and he wasn’t going anywhere. One day a light bulb went on inside my head. I thought if I must live with this disease I might as well do something about it. I started looking for support groups. Unfortunately for me there was none where I lived at. In my search, however, I came across the National Psoriasis Foundation. I gave them a call. There was no way I would know how important that call would become. On the phone was a wonderful woman who was over their advocacy community. After telling her my story she informed me that they were starting a new group of patient advocates who would do things in their community to bring awareness to our condition. She offered me the opportunity to join the group. I accepted it without hesitation.

The right choice

That was the best choice of my life. I met others like me living with the same condition. They all are amazing advocates in their own right. I can’t tell you what meeting them and a room full of others all with psoriasis done for me. I went all in to do whatever to bring awareness in my community. That lead me into so many opportunities and opened so many doors for me. The more I worked at those things the more I started to feel like having psoriasis brought purpose to my life. I still feel that way ten years later.

You can do this

I decided to do something. At the time I didn’t know what that something was going to be. However, that decision changed my life. If you feel like you want to do something but don’t know where to start just start like I did. Start searching for a support group, an online group, or an organization in your particular disease condition. The important thing is just to start. I guarantee you it will be rewarding. It is only through advocacy that we bring awareness to the medical conditions we live with.