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 odd reactions to it. When my disease is active, some people tell me I need to use a certain soap or shampoo, as if I don’t bathe. Psoriatic disease of the joints is the exact opposite. You can’t see it. People will tell me it doesn’t look like there’s anything wrong with me.
They’ll ask, “Why is this so hard for you?”
I’ve felt like I was at war with myself. I’ve had my thumb joints replaced because of psoriatic disease. I’ve lost my hair. I basically went bald, which is not 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 done feeling dirty all the time.
And once I accepted my condition -- and met others going through the same thing -- I felt like I needed to talk about it.
I have a lot more self-esteem now that it seems like the whole world knows.
No Longer Hiding
I used to avoid sleeveless shirts because I'd get psoriasis under my arms. I’d have to cancel plans at the last minute because I wouldn’t be able to wear clothes. I have inverse 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 in my legs."
But I finally came out and said, "This is me. This is what I have. This is what I live with. If you want to know about it, I can tell you. If you don’t, that’s fine. Just don’t insult me."
My friends said my past actions made a lot of sense when I finally opened up about my condition. That was such a relief. I started to feel better about myself. Plus, I started to feel better physically. I didn’t have as much itching and burning because I didn’t have as much stress.
I’d held that in for so long, not realizing I was being my own worst enemy by hiding.
Finding the New Me
I used to go to the gym two or three times a week for hours. Nothing was going to stop me from my workouts. I just pushed through my joint pain. Then I would end up in the 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."
That’s when I became a “One to One” mentor for the National Psoriasis Foundation. It’s a program that pairs people like me -- someone who’s lived with psoriasis for years -- with someone who’s just been diagnosed. It’s my new passion. I want to make sure that the next person’s road isn’t quite as hard as mine was.
I get a lot of comfort from helping others. When I found out I had psoriasis, no one I knew openly talked about it. I felt so alone. Now, I have a community to belong to.
Don’t get me wrong. My husband is a fantastic cheerleader. But to sit with somebody who actually has it, who actually knows what I’m talking about, is the most amazing feeling in the world.
It Gets Better
You may think that your diagnosis is the end, but it’s actually the beginning. Now you know what’s causing your symptoms. You’ll find a medicine that works, and you’ll feel better. You’ll have a life again. You might not have the life you used to have, but you can have one that’s meaningful and productive.
Nobody believes me when I tell them that, but it really is true. I used to be a wallflower, always standing in the back. Now I meet with my state representatives or I go to Capitol Hill to talk about what it’s like to have psoriasis. I do all of these things that I never thought I’d be able to do.
And there’s a major difference in my symptoms pre- and post-diagnosis. My scalp used to be thick with scales. I would get psoriasis so bad in my ears that I couldn’t hear. I went to the emergency room once because I couldn’t put any weight on my ankles.
It took me a while to find a treatment that worked. But now I take a medication that has me about 85% clear with no new joint pain. I’m calling 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. That’s a big thing for me.
Mentally, I feel the best I have in 20 years.
Tami Seretti, 53, was diagnosed with psoriasis when she was 27 and psoriatic arthritis at 38. She is active with the National Psoriasis Foundation. She also advocates for Clara Health’s Breakthrough Crew and the Arthritis Foundation. She lives with her husband, mom, three cats, and a dog in Center Township, PA.