I reflect on the time back in college when my roommate spread a rumor that my disease was contagious. Eight years later, it still upsets me. I’m still angry. I often wish I could go back to that time in my life as the woman I am now: strong, proud, and unafraid to speak about my disease. Back then I was a funny and outgoing young woman, but unsure of myself. I hated my psoriasis and never spoke of my condition. Today I realize that maybe my issue doesn’t involve forgiving my roommate, but regretting that I didn’t have the ability to defend myself back then.
Having a visible disease like psoriasis puts you at risk of ridicule. Check out the stories below of psoriasis patients via Facebook Messenger, who encountered people who weren’t kind about the disease, and the advice they offer for how to deal with those situations. (Some names have been changed to maintain anonymity.)
Justin: Own your hurt
The worst encounter I had was with my wife’s step-mom. My wife was 8 months pregnant with our first son when we went to their house for a visit. My wife’s step-mom had sheets all over the furniture. We knew she had OCD, but this was even more bizarre than usual.
She proceeded to tell us that it was because she couldn’t handle my skin. She said that in previous visits it would take her hours to clean up my “sheddings,” and it bugged her so badly that she called her relatives to ask if she should just throw her vacuum away. She continued to tell me that there were treatments out there, and I was just being stubborn and lazy for not doing anything about my condition.
The icing on the cake was that she told us that if I didn’t get my skin under control, my child was going to suffer because other parents wouldn’t let their kids come around me. By the time we left, my wife and I were a wreck.
I don’t know if I have ever completely forgiven her, because I still get angry and embarrassed when I think about that night. However, we are amicable around each other now. I had to come to a place where I realized she was the one with the problem. I can’t constantly change myself, or my skin, to please other people.
The advice I would give is to let yourself feel the hurt others have caused you. Don’t brush it off. Mourn comments. Mourn the reality. Realize that you are “different” and will sometimes be ostracized because of it. Then, remind yourself that this is a condition you never asked for, a condition that is out of your control, and surround yourself with people who will keep you strong.
Sarah: To let go or to hold on?
When I was diagnosed, I had a boyfriend who decided he didn’t want a girlfriend for the summer once the weather got nicer and clothes started getting smaller. He didn’t blatantly say it was because of my psoriasis, but I always suspected.
My friends and family have been very supportive and anyone who has ever said anything was a stranger. In the instance that someone says something rude in the future, I would decide if it was worth keeping them in my life after having a conversation with them and explaining why their comments/actions were hurtful. My advice to someone going through it would be to always communicate openly with that [hurtful] person and help educate them.
Jessica: Hurtful words spoken by a child
It’s hard for me to pick one person in particular who hurt me in regards to my psoriasis. I think when you’re dealing with this skin condition, a lot of people and incidents will take place and hurt you in one way or another. If one stands out [for me] it’s definitely this brief encounter I had with a little boy.
I was covered from head to toe in spots. It was summertime so I was wearing shorts, and this little boy asked his mom if she thought all those bug bites hurt. I know it’s silly because he obviously meant no harm but I was just so hurt by the outward recognition of my illness. But really he was probably just saying what a lot of people thought.
I never said anything to the little boy, but whenever someone commented in the future I would smile or politely comment back and tell them briefly about my condition. I was never negative or rude in return. I think you need to keep reminding yourself how hard it was for YOU to understand and accept what was happening to your own body. Imagine how someone else feels. I was actually surprised, and still am, at how many people start up conversations with me now and tell me how a family member or a friend or even they [themselves] have psoriasis, too! It’s natural to be afraid of what you don’t understand — so help them understand.
Alisha Bridges has battled with severe psoriasis for over 20 years and is the face behind Being Me in My Own Skin, a blog which highlights her life with psoriasis. Her goals are to create empathy and compassion for those who are least understood, through transparency of self, patient advocacy, and healthcare. She is currently a post-bach student at Georgia State University pursuing a career as a Physician’s Assistance—her passions are dermatology and sexual health. Alisha also shares her passion as a Social Ambassador of the Psoriasis HealthCentral Facebook page where she shares timely tips, stories and insights on living with psoriasis. You can also find Alisha on Twitter.