Why I'm Vocal about My Disease
The end of October brought World Psoriasis Day. This was the first time I ever acknowledged the day and even participated as much as I could. My family and I went to a local fundraising event for psoriasis decked out in Psoriatic Crusader costumes. On the way home, we stopped at the grocery store to pick up some items for the upcoming week. Our outfits got a lot of notice, and even some questions. My oldest son was always quickest to respond proudly that it was World Psoriasis Day.
I beamed with pride as I thought of him explaining the disease like it was the most normal thing in the world. I look now at the picture of our little family from that day and have to laugh. A year ago, I would never have been caught dead showcasing my psoriasis. I loathed talking about it. I wanted to ignore it, and I wanted everyone else to ignore it too!
Find your voice
So what changed? My wife’s coworker needed a psoriasis patient to be part of a panel at a live educational event in Seattle. She sweet-talked me into volunteering with the promise of a trip to my favorite brewery in the Emerald City. I hesitantly showed up and answered the crowd’s questions about how I coped with various aspects of psoriasis. The longer it went on, the more comfortable I began to feel. I examined the audience a little closer and noticed patches of red skin peeking from the ends of long sleeves or from behind meticulously placed hairstyles. They were like me!
After the presentations and panel time was finished, a middle-aged woman came up to me and thanked me for sharing my experience. I was shocked. She said that she had felt alone in our disease for so long, but hearing someone else vocalize all that she was feeling made it a lot less lonely. I will never forget that moment, and it fuels me every single day. Before that, I had not met anyone with severe psoriasis. In public I usually got someone who would say, “I have that too!” and then show me the teeniest spot on their elbow.
It may seem egotistical to enjoy talking about yourself, but when it comes to a chronic illness like psoriasis, it is the most selfless thing you can do. My favorite quote comes from Connie Palmer and reads, “a perfectly visible, exterior, unhidden disease, but it is precisely the disease of the one who hides.” It feels natural to try to hide psoriasis, because it often is associated with hurtful comments and embarrassment. I felt that way for years. What I have found, however, is that the more I talk, the more I find the stigma dying.
My favorite part of telling my story is the stories I get in return. Strangers from all over the world have opened up and shared their pain and victories with me. The more transparent we become, the stronger we become. Irons sharpens iron. It is so common to feel like a leper with this disease. We live in a time and culture that idolizes appearance. I can’t go to the shopping center or watch some Monday Night Football without being bombarded with magazines and commercials with airbrushed celebrities telling their “perfect skin secrets.”
So how do you do it?
Here are a couple ways:
- Look for a psoriasis meet-up in your area. Don’t see one? Create one! Meet ups are a great way to meet others locally without the facing a formal support group setting.
- Explore social media. Twitter, Facebook, and Instagram are home to many other advocates and health activists spreading awareness. Search for #psoriasis #chroniclife #spoonie to find others like you.
- Build confidence by reading blogs. So many great bloggers out there! Hearing their stories might boost your excitement about sharing your disease story.
- Talk with your loved ones. Many other sufferers I have talked to express that they feel like those closest to them don’t understand what it is like to live with psoriasis. Most of the time that is true; if they don’t have a chronic illness, they can’t begin to imagine what day to day life is like for you. Share about the unseen areas of your battle: fatigue, depression, anxiety.
Most importantly, remember that your story is important. Your story is unique. Your story has value. Share it!
How often do you experience brain fog?