Are You an Advocate or Non-Advocate?
Is psoriasis advocacy my life?
I loved what I do for my community. I stand in unison with psoriasis patients all over the world. I was covered with psoriasis over my entire body for 40 years of my life. What concerns the psoriasis community; concerns me.
I know their burdens, fears, worries and most importantly I know the disease. I talk to people I have never met because in my heart I want to help them. There are people who can’t talk with State Legislators or go to Capitol Hill every year. I go for them.
I go to Capitol Hill yearly to lobby and frequently speak at Town Hall meetings. I have been an active advocate for this disease for over a decade now. I ran a support group in the Maryland, DC and Virginia area for years.
I volunteer for several organizations and vow to help find a cure for psoriasis and psoriatic arthritis. I share this information with my psoriasis family.
Advocacy is bigger than me
My advocacy work is bigger than me. I feel that I'm the go-to person. There are people that are confined to their chairs that can’t get around. So many of us are in so much pain daily that we can hardly get out of bed. I have talked to people that are too depressed to want to come out into society.
This is where I come in. I am honored to be their eyes, ears, and voices. I speak for people who can’t speak for themselves. This is real advocacy work. You never have to see me but have an ear to hear me.
I get calls from people with psoriasis daily who are devastated. I’m not a doctor and I never give medical advice; most people just want to know that they are not alone. I’m just like them. I put myself in their shoes and can relate to them.
This is what being an advocate is all about. We don't realize how big something really is until we step back and analyze the big picture. I don’t have thousands of followers on every social media site, but I do have a community that trusts and believes in me. They know I am there for them, day or night.
There are no coincidences in life
I believe everything has its purpose and being an advocate is no different. I never set out in life to do what I do. I personally never wanted to ever talk about my disease to everyone.
I didn’t even want anyone to know that I even had psoriasis. Somehow this became my destiny. If you haven’t stepped into what your advocating for and taking the burden of that cause than you might want to rethink what you are doing.
I'm just saying it's so much more than being seen on paper or because you have that great speaking voice. It’s about stepping out of your comfort zone and feeling the pain that someone else has.
What advocating for psoriasis means to me
When I speak to someone, I can feel their pain. They trust they can confide in me and I will take the proper steps to try and help them. I have said this many times: I work behind the scenes.
I’m the person who calls different organizations to help you with your co-payment or who tries to get you into a teaching hospital. I’m the person who calls a company directly to see if you can get your medication for free or for a discount. I don’t feel that I must shout out everything that I do, but my community knows.
The importance of psoriasis advocacy
I have a purpose in life. When you are covered over 70 to 80% of your body your whole life’ you have to tell people how you came out on top. I tell my story to inspire others, not for pity.
I advocate because it gives me an inner joy to really know that there are no coincidences, that something so powerful as advocacy work changes lives. People need people and I have stepped out of my comfort zone and making an impact upon lives in my community.
Does your psoriasis skin feel out of control? How are you managing?