As a woman of color with psoriasis, I have to self-advocate
Diane
State: Maryland
Congressional District: MD05
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Diseases
Chronic Pain, Immune Disease, Skin Disease
Issues and Challenges
Diane has encountered: Copay Issues, Caregiving, Invisible Illness, Medical Discrimination, Step-Therapy / Fail First
My Story
My Story by Diane Talbert
I was a test subject for many years. I have endured things that would make most people cringe in their shoes. Doctors have been in my life since I was a toddler. It didn’t dawn on me until 30 years later that these doctors didn’t have a clue how to treat my dark skin and how they just dismiss me because I was a woman.
I had severe psoriasis my whole life. My doctors would give me enough medication for 3 days and tell me to add something to it to make it last. REALLY!!!
I was told for 25 years that my pain was not real. Doctors never saw me, only my black skin. I had a doctor put me in a light box and burned me because he thought I needed to stay in the box longer because the light couldn’t get through to my skin. How dumb can you be? The better question is how dumb could I have been to believe him? This brought me on the road to mistrust for doctors for a long time. I have had six biopsies to prove that I have psoriasis, but my all-time favorite line is "black people don't get psoriasis".
I have learned some self-management techniques through the years. I try and eat right and walk 20 minutes a day. Yep, that’s all I can get in. I stay upbeat and if you’re a debbie-downer, stay on your side of the street. I don’t need it. But understand you are not alone, and I will be there for you.
Chronic pain put me in a different category. It changed my life. If it weren’t for me having psoriasis and psoriatic arthritis, I wouldn’t have had the pleasure of speaking at the FDA or going to Capitol Hill every year. I have been so honored to speak at events, meet so many wonderful people, and of course traveling. My first advocacy work was having a support group of ten people that grew into 150 people in my area by the end of this journey. I was the queen!! I had people that donated snacks, drinks and provided speakers who spoke on various subjects.
As a woman and a woman of color. I used to have extreme anxiety. I knew I had to be twice as good for my health and know my wealth. Learn to tell your story and tell it well. Nobody knows your journey like you do. We have a voice; share your pain. I have learned to become empowered. If I can just reach one person, that is enough.
I still have days where I don’t feel I am enough, but I have enough advocates in my circle that say I am. I will keep learning and teaching others. No one will feel alone if I am there. I know my community and understand what we all need.
My last piece of advice is that don’t let anyone tell you how you are feeling. We are all different. You might not see my pain, but that doesn’t mean it’s not real. Let’s start raising our voice and speak out about health disparities. Know who you are. We have all heard that knowledge is power; so let’s get that knowledge out and help reduce disparities.
My Motivation and Inspiration
My motivation is to help people and make the most of my life. I choose to live life to the fullest. I tend to bite off more than I can chew. Since the pandemic; I decided that I needed to free up time for myself. I decided to stay focused on projects and ventures that bring me joy. I like learning new things, especially in the advocacy world. There is always something new to learn. I recently just realized I like coming up with creative ideas to improve something that I am working on. I am a creature of habit.
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