By Tami Seretti, as told to Keri Wiginton
For me, one of the hardest things about psoriasis is that people can see it. And sometimes they have really weird reactions to it. When my illness is active, some people tell me that I need to use a certain soap or shampoo like I don’t bathe. Psoriasis diseases of the joints are the complete opposite. you can’t see it People will tell me it doesn’t seem like there’s anything wrong with me.
They will ask, “Why is this so difficult for you?”
I feel like I’m at war with myself. I had my thumb joints replaced for psoriasis. i lost my hair I basically went bald, which isn’t the best thing for a woman.
I’ve spent a lot of time hiding. But I finally got to a point where I decided I was done.
I was done feeling ugly.
I was tired of feeling dirty all the time.
And as I accepted my condition — and met others who were going through the same thing — I felt I needed to speak out about it.
I have a lot more self esteem now as it seems like the whole world knows.
I used to avoid sleeveless shirts because I would get psoriasis under my arms. I had to cancel plans at the last minute because I couldn’t wear clothes. I have reverse psoriasis. That means I get it in my skin folds and groin. And who wants to say, “I can’t wear underwear because it cuts into the broken skin on my legs.”
But I finally came out and said, “That’s me. That’s what I have. I live with that. If you want to know, I can tell you. If not, that’s fine, don’t insult me.”
My friends said my past actions made a lot of sense once I finally opened up about my condition. That was such a relief. I started feeling better. Also, I felt better physically. I didn’t have as much itching and burning because I wasn’t under as much stress.
I had kept this to myself for so long, not realizing that I was my own worst enemy by hiding.
I used to go to the gym for hours two or three times a week. Nothing would stop me from my training. I just pushed through my joint pain. Then I would end up in bed for 3 days. But one day, a few years ago, I said, “This is crazy. I need to find a new hobby and stop hurting myself.”
At this point, I became a one-on-one mentor for the National Psoriasis Foundation. It’s a program that connects people like me – someone who has been living with psoriasis for years – with someone who has just been diagnosed. It’s my new passion. I want to make sure the next person’s path isn’t quite as hard as mine.
It gives me great comfort to help others. When I found out I had psoriasis, no one I knew spoke openly about it. I felt so alone Now I have a community to belong to.
Do not get me wrong. My husband is an amazing cheerleader. But sitting with someone who really has it, who really knows what I’m talking about, is the most amazing feeling in the world.
You may think your diagnosis is the end, but it’s actually the beginning. Now you know what is causing your symptoms. You will find a drug that works and you will feel better. You will have life again. You may not have the life you used to have, but you can have one that is meaningful and productive.
Nobody believes me when I tell them this, but it’s really true. I used to be a wallflower, always stood at the back. Now I meet with my state officials or go to Capitol Hill to talk about what it’s like to have psoriasis. I do all these things I never thought I could do.
And there is a big difference in my symptoms before and after the diagnosis. My scalp used to be thick with dandruff. I got such bad psoriasis in my ears that I couldn’t hear anything. I went to the emergency room once because I couldn’t put weight on my ankles.
It took me a while to find a treatment that worked. But now I’m on a medication that gives me about 85% relief with no new joint pain. I call that a win. Some of my psoriasis is still visible, like on my scalp and ears. But now I look in the mirror and I’m not embarrassed. This is a big thing for me.
Mentally, I feel better than I have in 20 years.
Tami Seretti, 53, was diagnosed with psoriasis when she was 27 psoriatic arthritis at 38. She is active with the National Psoriasis Foundation. She is also an advocate for Clara Health’s Breakthrough Crew and the Arthritis Foundation. She lives in Center Township, PA with her husband, mother, three cats and a dog.