Telling someone — no matter how close you are to them — that you have psoriasis can be difficult. In fact, they may notice it and say something before you have a chance to bring it up.
In any case, getting the boost of confidence you need to speak up and talk about psoriasis can be challenging, but it can also be worth it. Need proof? Take a look at how some of your fellow psoriasis peers are speaking up.
I tell people without hesitation because it avoids embarrassing situations. For example, one time I was getting my hair washed at a hair salon. The beautician gasped, stopped washing my hair, and then stepped away. I knew immediately what the problem was. I explained that I had scalp psoriasis and that it wasn’t contagious. From that time forward, I always inform my beautician and anyone else who may have a negative reaction.
Debra Sullivan, PhD, MSN, RN, CNE, COI
The spoon theory has been the best way. ... You start with 12 spoons. The spoons represent your energy, what you’re capable of doing for that day. When explaining [psoriasis] to someone, get the spoons out. Tell them to run through their day, and that you will show them how that works in your body. So start [with the] morning routine. Get out of bed, one spoon gone. Take a shower, another spoon gone. ... Most people with autoimmune diseases will run out of spoons while at work, not allowing them to fully function.
Mandie Davis, living with psoriasis
Nothing to be embarrassed about. I dealt with it for years until one day I landed in the hospital from it. Your first step is to get a dermatologist! Psoriasis has no cure yet, but you don’t have to suffer or just deal because of it. You have so many options.
Stephanie Sandlin, living with psoriasis
I’m now 85 and I’ve not had an opportunity to share with anyone, since I’ve decided to suffer this privately. But now I would be interested to hear and learn anything that would be helpful to ease the stiffness and pain.
Ruth V., living with psoriatic arthritis
The summer going into my junior year of high school, I went with some friends to the beach. My skin was pretty spotty at the time, but I had been looking forward to relaxing in the sun and catching up with the girls. But an incredibly ballsy women ruined my day by marching up to ask if I had the chicken pox or “something else contagious.”
Before I could explain, she went on to provide me with an incredibly loud lecture about how irresponsible I was, putting everyone around me in danger of catching my disease — especially her precious children.
I wasn’t as comfortable in my skin then, as I was learning how to live with the disease. So instead of the earful that I replay in my head about what I would have said, she got a whispered reply of “Uh, I have psoriasis” and me shrinking my 5'7" lanky frame into my beach chair to hide from everyone staring at our exchange. Looking back, I know it was probably not that loud of a conversation, and I’m sure not that many people cared to stare. But I was too embarrassed to notice at the time.
I’m reminded of that encounter whenever I put on my bathing suit. Even when my skin is in good shape, I still think about how she made me feel. It ultimately made me a stronger person, but I can clearly remember feeling incredibly self-conscious and horrified.
Joni, living with psoriasis and blogger of Just a Girl with Spots
A lot of people have it, but not a lot of people talk about it. It’s embarrassing. It can feel like a superficial thing to complain about. (It could be worse, right? It’s just on my skin.) And it’s hard to meet fellow psoriasis patients. (After all, most of us do our best to make sure no one else can tell we have it!)
Sarah, living with psoriasis and blogger of Psoriasis Psucks