8 May, 2019

Me & my psoriasis: An anonymous story

A 32 year old from Seattle shares her story battling psoriasis everyday.

What made you want to share your story?

I wanted to share my story because somewhere in the world there is a 16-year-old girl retreating into herself because of her outer appearance and I want her to know that there are options out there, that things get better, and that she is not defined by the lesions on her skin.

What’s your experience been living with psoriasis?

I was diagnosed at 16 when I was still living in the Philippines. I don’t really complain much so I thought I just had a bad rash and dandruff. I think my nanny noticed it getting worse and worse but I never thought to complain. I just wore jackets all the time and retreated into myself; not great when you’re smack in the middle of puberty and studying in an exclusive all-girls catholic school.

One night, my mom came into my bedroom and started looking under my clothes. I remember the horror in her voice but I pretended to be asleep all throughout. It was very traumatic hearing panic in your mom’s voice, I will never forget it. Anyway, we have extended family who are doctors and they helped me connect with a dermatologist. A biopsy was done and it was confirmed that I had psoriasis—we’ve never heard of this until then. Treatment options were very scarce. I had to take methotrexate for 9 years. This really just changed when I moved to the US (2016) and a whole plethora of treatment options were presented to me.

Right now, I’m using Cimzia because I’m breastfeeding. My psoriasis is still present but it’s never gone back to how it was before. I find comfort in the fact that there are more things to try here than back home and I’m not locked into just taking horrible medications every weekend. Over the years though, I’ve become more comfortable with myself and have grown to love and accept the skin I’m in.

How does having psoriasis affect your everyday life?

Although it has gotten better over the years, I’m definitely more conscious about my appearance and my clothing choice. I can’t just pick a dress from the rack without thinking about which part of my body will be seen.

On the bright side, having this condition allows me to be a little bit forgiving. Because I know a flare up is triggered by stress, I try to filter the things I stress about. I don’t always succeed but it definitely helps with self-awareness.

Do you believe there will be a cure for psoriasis in the next 25 years?

I work in the healthcare setting and, yes, I do believe that there will be a cure sometime in the future. To be honest, I don’t expect it to be within my lifetime but that’s okay. I just need to believe that people who will be afflicted by this in the future will have better outcomes. And that is enough.

What’s the best piece of advice you’ve been given about living with psoriasis? How has it impacted your life?

When I was younger, my older brother would always write “wear the shirt you want to wear” in his letters to me. I never really knew what that meant until I reflected more about it. It’s taken a long time and a lot of work to get myself in this level of comfort with my skin. I just always remind myself that I am not a sum of my lesions and that I should live my life the way I want to live it.

Do you have an eczema or psoriasis story you’d like to share? Feature in our Beating the Itch series by getting involved here.

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