PSORIASIS TOOK OVER MY LIFE UNTIL I FOUND A COMMUNITY OF FELLOW WARRIORS
Diagnosed with psoriasis when she was 14, Reena Ruparelia let the condition dictate her life and confidence level for nearly two decades. Then, she found an online community of like-minded warriors who helped her increase her self-worth and body positivity. Today, she is an activist for spreading hope and education to others living with psoriasis.
What was it like, at 14, to be diagnosed with psoriasis? The words that come up are devastating and heartbreaking. I was just about to start high school and, metaphorically, a new life. I was about to be a different person! And then, suddenly, I have these red spots all over my body. I was so concerned about my appearance that I really didn’t care about how I physically felt. I was just like, “I need this to go away so people will be friends with me.” I was confused. I had so many questions, and, at the time, there was no internet so I couldn’t Google anything.
My general practitioner initially thought I had chickenpox, but when the spots didn’t go away two weeks later, he said, “I think you have psoriasis, but you’ll want to see the dermatologist to confirm.” I remember waiting for the magical day when this magical doctor would take all my problems away. Instead, I learned that psoriasis is an autoimmune condition in which my skin cells generate at such a rapid pace that my body thinks it’s attacking itself. It tries to protect itself in the shape of these dry, itchy, sometimes raised skin patches. The condition creates an inflammation in the body that has no cure, only treatment.
At the time, 26 years ago, I was prescribed coal tar, which is a slimey, green paste that stinks like mothballs. I would also drive about an hour into the city to get a less than two-minute UV light treatment. I went from playing soccer and hanging out with my friends at the mall to spending my days after school going in for treatment. They worked for a little bit, until they didn’t anymore. The body gets used to one treatment, and then it’s like, “Okay, you have to do something different now.” So, even when my treatments were working, there was always this fear. I always thought, “Ok, but when’s it gonna come back?”
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There are certain things that cause flare-ups, too. When I put my body into a state of stress, for example, like running or doing high-intensity workouts, I can have a flare-up. The time of year can have an effect, too. Fall weather is always a trigger. Winter into spring, too. So, even though I’ve discovered all of these lifestyle changes over the years that help — like avoiding gluten, alcohol, nightshades, and sugar — I usually can’t avoid a flare-up when it comes to other triggers that I can’t control, like seasonal changes.
Five years ago, I stopped traditional treatments. I haven’t used any steroid creams or followed a formal treatment plan. Instead, I’ve turned to natural remedies like looking at my diet and exercise habits. But I haven’t been able to get my psoriasis under control, so I recently went to the dermatologist to talk about other options. I’m absolutely not opposed to traditional medicine, especially when I need some help. I just don’t want to have to use certain drugs forever. I have learned that it’s really important when living with this condition to make sure I do all of the research — do my due diligence.
After living with psoriasis for two decades, things really started to change for me in 2015 when I joined social media. I started browsing hashtags like #psoriasiswarrior and #psoriasis, and I began to see other people who are also living with this condition. It sparked something inside of me. I thought, “Well, maybe I want to share some of my own feelings and my own thoughts.” Along with finding a community of people who knew exactly what I was going through, it also opened my mind to trying different skin treatments. I would hear about things that worked for other people like an anti-inflammatory diet or adding water to the topical cream that I was using, and I would try it myself.
MY TRUE HEALING CAME FROM BEING VULNERABLE ONLINE AND BEING HUMBLE ENOUGH TO RECEIVE SUPPORT FROM OTHERS. THEY LIFTED ME UP, AND NOW I’M IN A PLACE WHERE I’M ABLE TO LIFT OTHERS UP.
These tips were great, but the biggest thing that I learned from this online community is that I’m not alone. That was the most illuminating thing. Before, I didn’t know many people with psoriasis. Maybe someone would secretly confide in me after they saw my hand, or something like that. But usually, you never know who else around you might have it because we’re always covered. Psoriasis warriors are ninjas. We hide our skin really well, and we don’t want to talk about it. Now, when days are hard, I have a support system to lean on of people who get it. Social media saved my life in many ways — it helped me come into my own and come into a place of real learning, where I could connect and share in a way that I don’t think I ever could before.
I remember always saying, “When my skin is clear, then…” Like I was waiting to live. “When my skin is clear, then I’ll wear these shorts. When my skin is clear, then I’ll travel to Bali. When my skin is clear, then…” I finally got tired of waiting. My life was just passing me by. With the support of others with psoriasis, I was able to take the next step, which was being more vocal about what I was going through and becoming a voice of optimism for others. Through my online presence, I began to make a space for education and empowerment for those suffering and struggling the same way I was. My true healing came from being vulnerable online and being humble enough to receive support from others. They lifted me up, and now I’m in a place where I’m able to lift others up.
It’s cool that the people who have known me for a long time now see this different level of confidence. I’m a lot more expressive in my clothing today, whereas before, I didn’t want to be seen. People still look and sometimes they’ll ask about my skin, but I’m much more comfortable explaining what psoriasis is.
I never say I’m in a place where I don’t care, because sometimes I do. There are still days when I don’t want to have my legs out because I just don’t have the energy to deal with questions or stares. But I am also in a place of acceptance. I let myself go through the emotions. I go to therapy. I journal about my condition. I let myself feel and take the next step, one flare-up at a time. Today, I can live well without suffering. And I finally took that trip to Bali — it was epic.