Ask The Advocate: Responding To Negative Comments About Psoriasis
While each person’s psoriasis journey is different, and their psoriasis symptoms and treatment experiences may not be the same, there are frequently well-worn paths that are taken and common barriers that are encountered by people living with psoriasis.
Psoriasis is an autoimmune disease that causes chronic inflammation of the skin and other body parts and systems, currently, there is no cure. If you're looking for a community that understands, then look no further.
Advice from our advocates
When it comes to your health, you can be one of your best advocates. But when you’re in pain and coping with the emotional toll of psoriasis, it isn’t always easy to advocate for your own needs. We asked our advocates for their perspectives and for some words of wisdom when it comes to living with psoriasis.
Our question: How do you respond to negative comments?
When I was younger, my "go-to" was to cry when people said negative things to me. I actually took this abuse for many years until I found my voice and learn to used it to educate others when they can't be nice. I have had severe psoriasis for over half my life. I was covered over 80% of my body, so people could be mean and ask dumb questions.
My favorite one is "are you contagious?" If I was contagious, why would I be around people? I get it, but I'm not an idiot? It's hard for people to understand that I always flare. I understand you don't get it! I had to educate myself so I could explain to people what psoriasis is.
I would say, "I have psoriasis which is an autoimmune illness and you can't get it." I had a young lady look at me once and said, "oh, that looks so nasty on your skin. I would not come outside if I was you." I calmly told her that most people see me and not my skin and that I work for the federal government with people that have their Ph.D.'s and Master Degrees and welcome me as their equal, not what I looked like.
I handed her a business card from my psoriasis support group and asked her to call me and walked away. I was so furious, that I had to step away from that situation. I never got personal or attack anyone's character. I used to hide, but one day just decided that enough was enough. I just wanted to tell people that I have feelings just like you. So instead of getting frustrated, I educate; even if a person stares I take that moment to tell them what I have.
I always seek to educate the individual who says something negative about psoriasis in the hope they will listen and change their attitude. I have encountered a few comments myself in the past including “ew” and points and stares at my condition.
The best way to educate is to explain what the condition is, so it’s psoriasis, how it manifests, so, unfortunately, we have a gene in us that means our skin sheds cells faster than most, and what the ways are to treat it, so topical treatments can be helpful, as can light and biologic remedies. It’s also helpful to say that it’s not contagious as sometimes people can worry about that.
If that doesn’t work, then the best thing to do is remind yourself that it’s not your fault. You are always going to encounter ignorance and sometimes malevolence, and while most people who comment are just unaware of what the condition is, you do get a few individuals who are just being plainly nasty in the hope of evoking some sort of reaction. It’s best not to give that, so just walk away from the situation and be kind to yourself.
When I was younger I would just run away, hide, and cry when someone stared at me or made a comment about my skin. Nowadays, I’d say it depends on the day. So when someone stares or makes a negative comment, I look at it as a way to educate, saying something like “I live with psoriasis, it’s a non-contagious skin condition that causes my skin to break out in red itchy patches.
Some days are good and others are tough. Feel free to ask me any questions you may have.” However, on some days I don’t have the energy and just ignore comments/ stares. I've come to realize that I don’t need to react to negativity every time it’s presented to me. I look at their comments as their problem vs. mine!
I didn’t always respond well to negative comments about my psoriasis. There were times when people would say something insensitive in reaction to seeing my skin for the first time. Others might be critical of my treatment choices or think I must not be doing enough for my skin. I naturally returned those comments with an equally insensitive or harsh response.
Then I went through a healing process where I learned to accept and value myself, psoriasis, and all. I didn’t just come to understand that psoriasis does not define me. Rather, I came to see who I am is partly came from living with a severe chronic illness every day. I developed greater patience, compassion, and listening skills by considering how I would want to be treated by others.
As I became more secure with psoriasis and myself, I could better focus on others and be gracious to them. When people made negative comments, I took that as an opportunity to inform them and share my psoriasis story. If they didn’t seem interested, I could change the subject and move on from the comment without becoming upset.
The experience of inner freedom allowed me to not take those comments personally.
Negative comments are a very hard part of living with psoriasis. In the past when people that have said negative comments to me about my skin had no idea what psoriasis was. They were confused. As a result, I use that time as a teachable moment. I correct them and tell them what is going on with my skin exactly.
I have always stayed strong in front of people that have spoken negatively about my skin, but I will admit sometimes it does make me sad afterward. I have been living with psoriasis for ten years and I must say that now, negative comments don’t bother as much because I am more confident about my disease.
Dealing with negative comments about psoriasis
Working through and processing negative comments about psoriasis is not easy. We get it. If you're looking for validation, you're in the right place. We want to hear your story.
Our collective voices have a huge impact, and we hope you will add your unique voice. The best part? Your journey living with psoriasis is all you need to get started!
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