BY DIANE TALBERT
I have had psoriasis and psoriatic arthritis for many years and there is still a stigma surrounding the disease.
THE STIGMA OF PSORIASIS
I have always been a very good natured person; but during my teenage years I felt isolated, left out and alone. How do you make friends as a teenager when your whole body is covered in scales? When everybody points at you? When you are covered in clothes from head to toe even when the weather is 100 degrees outside?
Everyone treated me like an outsider. I was not invited to parties or outings. The stigma was terrible. I stayed on the sidelines all through high school. I was depressed, had low self-esteem and I felt ashamed. It was like I was in a cell alone for years.
CONSEQUENCES OF THAT STIGMA
At the age of 25 I went to my first psychiatrist. He said I was “smiling on the outside and crying on the inside”. That was my way – I always smiled, no matter what. It was how I coped with being rejected. I went to him for a few weeks. He wanted to put me on an antidepressant. The medication would make me feel more alert and alive but would flatten my emotions. So, the drug would get be out of bed every day, but I would turn into a zombie? I didn’t think that was for me. My goal was clear skin, so I didn’t go back to him and I didn’t take any mood medication. I chose to go another route.
Let me just say that, if your psoriasis is causing you to be depressed and sad or if you are having thoughts of hurting yourself, find professional help. They can help you to cope, teach you how to fight back. You will also get a better understanding of what’s happening to your body.
Over the next few years I dealt with my condition as best I could. I have always had insurance, so I saw my doctors often. They would all say the same thing. This is the worst case of psoriasis I have ever seen. There was just nothing the doctors could do; or so I thought.
MY BREAKTHROUGH
It sounds strange but, I got my big break when my psoriasis almost killed me. I had become erythrodermic, which is to say, my whole body was covered with psoriasis from head to toe. I went to my PCP, experiencing waves of hot and cold. My doctor told me all my skin had fallen off and had me admitted to the hospital immediately. The scaling, burning and itching was unbearable. My body was losing water and heat through my skin. The doctors at the hospital wanted to treat me for infections. I had made my peace with God. There was no way I could survive like that.
But then I decided I wasn’t going to take my condition lying down anymore. I joined the NPF (the National Psoriasis Foundation) who encouraged me to start a support group in the Metropolitan area. Over 20 people showed up to my first meeting. I ran that support group for 12 years and had a following of 150 people. I also started looking for a good doctor who knew how to treat my psoriasis and psoriatic arthritis.
The doctor I found (who was great!) put me on the best medication that was out there – a biologic and Methotrexate. But the prescription biologic led to my first real battle with my insurance company. They insisted on putting me on a cheaper drug. Compliant but undeterred, my doctor immediately started the paperwork to get me onto the biologic he knew I needed. At that point I realized; I did not have to settle.
YOU ARE NOT ALONE
Don’t think you’re ever alone in this battle. You can start your own support group or join some that are already out there. I found psoriasis.org and WeAreFlaym on Facebook who offer great support. If you feel like you can’t go on anymore, or at the end of your rope, talk to your doctor, who can refer you to the help you need.
All I ever wanted was compassion, understanding and acceptance. I still want these things, but now I want to raise awareness, encourage research, and advocate for better care for people who have psoriasis.
Since the beginning of time, people with psoriasis have been stigmatized. With the right support and knowledge you can educate others and have a better quality of life, whether you decide to cover up or not.
Diane Talbert is a blogger, patient advocate and speaker for psoriasis and psoriatic arthritis. She has been an advocate for this disease for over a decade now. Diane has run support groups in the Maryland, DC and Virginia area, is a volunteer for several organizations and vows to help find a cure for psoriasis and psoriatic arthritis and stop the stigma associated with it. She loves being a wife, mother and grandmother.