Throughout life I have had several instances where I was confronted about the state of my disease. A few years ago I was at work, on break, outside minding my own business. A male coworker walked up to me and initially began what seemed like small talk. After a few lighthearted sentences for some reason, he felt comfortable enough to ask what was on my skin. At that time I was trying my best to hide my condition, but I couldn’t cover the plaques that covered my hand.
As soon as I attempted to explain, he interjects by saying, “You know, you are a really pretty girl but you have ugly skin…” My eyes swelled up as big as boats, but I couldn’t let him see me cry. The anxiety that hit me at that very moment was something that is honestly hard to put in words.
That moment was tough for me. I didn’t know whether to defend myself, explain my disease, or run and cry...
I decided to run and cry. I got to the rest room and called my grandmother and just cried. I felt so ashamed. Part of my despair was the fact that he called my skin ugly, confirming things I felt about myself. But another portion of my sadness was the fact he noticed something I was working so hard to hide.
Now, lets go back about 16 years ago. I was 14 at a new school in a new living situation. As you can imagine puberty and new circumstances were ruling my life at the moment. Due to my love for acting, I decided to join the drama club at the school, and was casted as one of the main characters in Pinocchio. The final days of practice had arrived, and my classmates and I were in dress rehearsal discussing how excited we were about our makeup and costumes. All of us were sharing the stage makeup but using different sponges.
It was time for me to apply my makeup and just as I was about to do so, the drama director intercedes and says in front of everyone, “Alisha you can’t use that makeup. I don’t know what’s going on with your skin, so you will have to get your own.” Again, another moment of anxiety, worthlessness, and sadness hit. I was so embarrassed. I just wanted to go under a rock and cry. Luckily there were others there that helped me get through that moment.
If you have a visible disease at some point someone will try to confront you about you disease. Here are a few tips I hope can get you through:
Think about what you would say. I know this seems a bit unorthodox, but it may help to envision yourself in an uncomfortable situation. Think about what you may encounter if you go to the pool or nail shop, and then prepare yourself for what you will say if someone confronts you.
Have your 30 second speech together. I think about the two moments above and I was so unprepared on what to say. I allowed anxiety and negative feelings get the best of me. But if I would have prepared a response for possible negative encounters I would have educated two people instead of running from them leaving them to think whatever they wanted.
Use tactics to combat anxiety. I used to feel a lot of anxiety when encountering situations that involved people seeing my skin. About 2 years ago, I drove an hour away from home to this amazing spa for a day of relaxation. The closer I got to the place the more I thought about what people would say about my skin. Once I arrived I sat in the car, cried, and ended up going home, the anxiety being too overwhelming.
Here are a few things you can do to help with anxiety:
- If you can, take a friend with you to where you are going for moral support (example; the pool). I always feel more comfortable when I have moral support around.
- Learn breathing techniques to help you calm down and think with clarity.
- Identify a trust partner who you can call on when you hit a moment of anxiety. This will be the person you will call if an issue with your disease arises. (Let them know you have designated them as your partner).