Today, we’d like to introduce you to Joni (girlwithspots), a PatientsLikeMe member who writes a blog called “Just a Girl with Spots.” How has she found acceptance with this chronic skin condition (which can cause itching, rashes and plaques) as well as the courage to wear a bathing suit? Check out our interview below.
1. Tell us about being diagnosed with psoriasis.
My diagnosis at age 15 was frustrating and dramatic. I was already super awkward – tall and lanky with a mouth full of braces – so to me it was the end of the world. The spots seemed to come on overnight and they took control of my skin. I felt self conscious and ugly all of the time. Even the word psoriasis felt ugly to me. I wasn’t comfortable talking about my skin condition to even the closest of friends. My friends and family knew that I had psoriasis, but not any of the emotions and stresses that I felt as a result of it.
At the time of my diagnosis, I didn’t understand why there was no magic pill that I could take and the spots would go away. Though told over and over, I also didn’t fully understand that my lifestyle and choices would help to play a large role in controlling my outbreaks. I played lacrosse and danced on the kickline, so I wouldn’t allow it to stop me from doing the things that I loved. But there were always the extra steps I had to take to cover it up to feel a sense of comfort – always two pairs of dance tights, leggings and long sleeves in the heat, extra make-up, etc. So even though I did the things I wanted, there was always something that held me back from feeling as carefree as a teenage girl should be.
2. You’ve blogged about finding acceptance with psoriasis. What are your top tips, and how does blogging play a role?
Not talking about my condition stuck with me until very recently, and it feels amazing to have finally let go of that internal struggle. Growing up with psoriasis was a challenge that I’m glad I had, it’s allowed me to find myself in a way that may not have happened otherwise. Blogging about living with psoriasis has been extremely therapeutic for me and is the reason why my skin is currently under control. It’s allowed me to get to know my skin on a deeper level and pinpoint what is and what isn’t working for me. My skin is always top of mind, but I always felt stressed and emotional about it, which was actually making it worse. Through a daily journal and blogging, my treatment plan is focused and I feel more relaxed than I ever have about my skin.
Psoriasis treatment is so much about trial and error; there are things that work wonders for others and would do absolutely nothing for me. It’s helped me to organize my thoughts and my own personal research to discover the right formula for me. For me, it’s eating fresh and organic foods that are higher anti-inflammatory, it’s exercising 3-4 days a week, using tea tree oil and heavy moisturizing creams and taking several supplements that I’ve found to be beneficial (daily multi-vitamin, omega-3 fish oil, milk thistle, turmeric, biotin, vitamin B-12, acidophilus). But I always find my biggest relief through the sun, so maybe it’s time insurance starts picking up the tab for my tropical vacations!
3. I see you vacationed in Florida over Memorial Day weekend. How did you cope with being in a bathing suit and “having spots”?
I had really wanted to find a new bathing suit for the summer that was white with red polka dots, so I could call it my new camouflage. I decided that instead of running from my spots, I needed to own them in my own way! But unfortunately I didn’t find one in time before I left for Florida! But even knowing and deciding that, I still had anxiety about being in a bathing suit. The past few sunny weekends had pretty much cleared up most of my upper body. But the spots on my legs have always been stubborn, so prior to the trip I had been treating them with a steroid ointment. That only left me with red spots and dark bruises, so not much better!
I decided the day before I left to stop stressing about it. I was going to Florida to celebrate the birthday of a close friend and I wanted to focus on enjoying the weekend, not hiding my spots. I posted about it a few days before I left and got several emails from friends with words of only love and support. I know that attitude plays a large role, but I also believe it’s necessary to only surround yourself with people who love you for you. And that doesn’t just go for people with psoriasis, that’s for everyone.
4. What’s the most helpful thing you’ve learned at PatientsLikeMe?
PatientsLikeMe has shown me that I’m not alone in my struggles and feelings about living with psoriasis. Having the ability to connect with people who understand exactly what I’m going through has reinforced the reasons that I started my blog. People with psoriasis are always there to provide guidance, treatment recommendations, and most importantly, their love and support. If I can help at least one person with my blog, then I’ve done what I set out to accomplish.
Answering frequent questions about my own condition lets me track my progress and allows me to take a hard look at how my skin is reacting from day to day, week to week, month to month. PatientsLikeMe really understands how different conditions can affect your day to day health, but most importantly how it affects your mental well-being. You understand how important a healthy mentality is and the large role it plays in battling any disease or condition.