First of all, I know I don't speak for all people with psoriasis in the world. But all the people I've spoken to who have psoriasis seem to be in agreement on most of these things, and I want to raise awareness about us and our disease.
If you don't know what psoriasis is, allow me to enlighten you. Psoriasis is an autoimmune disease that affects the skin; it creates red, scaly patches that flake and itch, and it is incurable. There are different types of psoriasis, but they all manifest in some kind of redness and irritation of the skin. The easiest way to describe it is that the immune system of a person with psoriasis thinks that it needs to produce more skin than the person actually needs, which results in these raised and flaky patches of dead skin. Psoriasis is usually triggered by something, and flares up most often around adolescence. Mine first showed up when I was about 13 years old, and has stuck around ever since.
So, on behalf of most people my age with psoriasis, I've put together a little outline of some things you should know about us and our condition.
1. It is not contagious.
This is probably one of the biggest concerns we have. One of my worst fears relating to my psoriasis is that if I go out in public with my legs showing, strangers will see the lesions on my skin and immediately think that I have some horrible infectious disease. This is just not the case. Psoriasis is caused by genetics, it cannot be caught. One of the hardest truths to deal with as a person with psoriasis is knowing that you cannot explain your condition to everyone in the world. There will be people who see your spots and think the worst. But no one can know a person's entire medical history by seeing them on the street. For someone with psoriasis, it takes an immense amount of bravery to wear shorts, or a tank top, and go out where other people, people who don't know about their condition, can see them. Please don't stare at us. Please don't ask about our spots. If we want you to know what they are, we will tell you. And please, please, don't jump to conclusions. We are people with feelings, just like you. Believe me, our bodies can make us feel enough like freaks without the help of the general public.
2. People with psoriasis are not dirty or unhygienic.
Psoriasis can be triggered by stress or injuries or other diseases. It does not happen because we don't take care of ourselves. It can be worsened by certain things in a person's diet, but it truly has nothing to do with personal hygiene. We have to pay very close attention to the things we use on our skin, so please don't think that we have psoriasis because of some lapse in judgment or because we don't keep ourselves clean. I promise you, we pay more attention to our appearance than most.
3. Our psoriasis changes how we present ourselves to the world.
As I just mentioned, having psoriasis makes a person look at their body differently than others might. Every day we make decisions on how we want others to perceive us. It's hot today--do I wear shorts? Do I stay inside? Do I want to try shaving my legs? Will the people who see me today ask me about why I'm wearing jeans in this heat? Can I put makeup on over my spots? Most of my friends already know that I hate summer. About 99% of why I make that statement is because of my psoriasis. Because the majority of my psoriasis is on the lower portion of my legs, aka the part that is uncovered in about every article of summer clothing. For me, wearing shorts or shorter skirts is just not an option. I don't feel comfortable doing it, and that's that. So when summer rolls around, I have two choices--stay indoors as often as I can, or wear things that cover my legs and try to suffer the least amount of heat exhaustion as possible. Some people with psoriasis are comfortable wearing shorts and other light articles of clothing, but some, like me, are not. All we ask is that you respect our decisions to do either of those things, and treat us like normal human beings.
4. Please keep your comments to yourself (unless we ask for them).
I truly mean this in the kindest way possible. Not every person with psoriasis wants to talk about it. I repeat, not every person with psoriasis wants to talk about it. If we do not tell you about it, it is because we choose not to. If we do tell you about it and invite you to discuss it with us, it is because we choose to. Every person with psoriasis is different. I cover my legs because I do not feel comfortable otherwise. It has nothing to do with who I am with. If I cover my legs around you, it is because I want to, not because I don't trust you, or anything else like that. It has nothing to do with you. Please do not make our disease about you. We are all doing what we can to treat ourselves and take care of ourselves. No one has the right to tell us what we should do or how we should feel about our bodies. If we say we are uncomfortable showing our skin, then we are uncomfortable showing our skin--please do not challenge us on this. Even if you say with the best intentions, "It's fine! Come swimming with me, I won't mind," I can assure you that that is not what it's about. Whether you are a spouse, best friend, sibling, or stranger, you do not have the right to challenge our personal standards of modesty and comfort in our own bodies. We will wear bathing suits if we want to. We will wear long pants if we want to. Please do not try to change our minds. All that proves is that you think your personal feelings are more important than our sense of safety and comfort. If you truly care about us and making us feel safe, you will let us dictate the terms of how we present ourselves to you. I promise, doing that will be infinitely more supportive than telling us that you don't care if we wear shorts in your presence.
5. We do need support.
People with psoriasis are people, first and foremost. We are not our disease. But sometimes, it can be hard to separate our sense of self-worth from our condition. People with psoriasis are more likely to struggle with depression, and that stress can trigger even more flare-ups. It can turn into a vicious cycle. Even with treatment, psoriasis can only ever be managed, not cured. I've said this multiple times already, but it bears repeating--every person with psoriasis is different. Some respond better to certain medicines, others don't respond at all. Dealing with a chronic illness can take a huge toll on a person, and there will be days when we feel disgusting. There will be days when we don't. Every day is a new battle, and we cannot move mountains. You can support us by treating us as human beings. Listen to us. Talk to us when we want to talk. Remind us that we aren't alone. There is so much you can do while respecting the boundaries we have set for ourselves.
6. We are trying our best.
This last one is more of an epilogue, a culmination of every previous statement. People with psoriasis are fighting so many different demons. We are juggling personal relationships, jobs, school, hobbies, and a ton of other things along with our health. We are just like you. Our disease changes things, but it doesn't change everything. We are taking every day as it comes.
In conclusion, I hope that anyone reading this who has a friend with psoriasis has learned something. My goal is truly just to help the people in this world be a little more sensitive to the struggles of those around them. Psoriasis is just one struggle of many, but it influences a large portion of my life. The least I can do is spread awareness.
And to my fellow humans with psoriasis, I want to reiterate--you are not your disease. You are beautiful, no matter the severity of your condition. No matter what treatment, if any, you are currently on. Your worth is not one bit tarnished by your malfunctioning immune system. You are beautiful, spots and all.