Why I Never Give Up: Finding Hope While Living with Psoriasis
For Janelle Hiles, 43, of Lebanon, Pennsylvania, living with severe psoriasis has been a struggle, at times, but she’s never lost hope. Here, she shares with us her journey, from discovering her psoriasis as a child to being one of her doctor’s “toughest cases” to the progress she’s made over time. Janelle also explains why she’s so hopeful for the future.
An Early Beginning
My psoriasis journey began when I was 10 years old. It started on my scalp—it was very itchy and flaky. My mother took me to a doctor who prescribed a tar shampoo to use.
Because I was so young, I wasn’t sure what to think, at first, except that it was new to me and it did make me feel uncomfortable because of the itching and scratching. As the years went on, it spread to my elbows and legs but disappeared from my scalp. It often made me very unhappy and I was embarrassed to show my skin.
The Search for the Right Treatment
I have undergone every type of treatment there is, from topicals and oral medications to biologics. I have had 100-percent clear skin maybe three time in 33 years of having psoriasis. Cosentyx, Tremfya, and Taltz have helped give me clear skin, but I was only clear for a year, at most, at a time. My body tends to develop antibodies to the biologics, which is why they stop working after so long.
To me, it’s a turning point any time I am clear of plaques and my psoriasis is under control. The scars still remain, but I am always happy to see positive results. It’s also important to me because I am not worrying about covering up my skin and not as embarrassed to be around other people.
Struggles Along the Way
The hardest part of living with psoriasis, for me, has been losing my confidence and self-esteem. Having all the scratching and the flakes falling everywhere can be very embarrassing. I’ve had plaques so thick, at times, that it was painful.
I also live with bipolar disorder and depression. Having flare-ups really causes my depression to get worse. Having psoriasis and being on both a biologic and an oral medicine seems to weaken my immune system. If I get sick with even a common cold or an infection, it sometimes causes me to have a flare-up. I also am a diabetic on insulin, so I try my best to stay healthy. Since I've been a teenager, I have also suffered with migraines, which I also take medications for.
Where I Am Today
Living with psoriasis today is a bit challenging for me. Even though the people in my life know what I go through, I am still self-conscious around them, especially my husband of 16 years. Right now, I am on Skyrizi and methotrexate, and my skin is all but clear. The thick plaques have disappeared and the itching has almost completely stopped. I also use a soap called Kenkoderm, which helps with the flaking and itching. My husband helps me shave my legs with his electric razor when the plaques are bad because a regular razor would cut me. It also bothers me when I can’t wear certain types of clothing.
Never Giving Up
I have learned that psoriasis is an auto-immune disease that attacks the body’s skin cells. Living with it has become very challenging at times. I’ve cried a lot, but I have had the best dermatologist for the past 25 years, and he has never given up trying new medicines to get me as clear as possible. I guess that is one of the reasons I haven’t given up either. I am one of the patients he has had the longest, and I am also one of the three toughest cases he has.
In the past 25 years, during the worst symptoms, I had the will to keep going because there was always a new treatment being developed. Even before meeting my husband, I tried to not give up fighting for something better. There was always hope that one day I would be clear. Ever since I’ve been with my husband, he has been one of my biggest supporters. He has been there to help rub the topicals all over when I was covered from head to toe with psoriasis, and he has helped me inject my shots.
My plan is to try to stay on a regimen that keeps me clear longer than a year, so I may live a life free from embarrassment and finally regain my confidence and self-esteem.
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