Ignorance or Meanness?
One of the most difficult things about having psoriasis is the rude, misinformed, and hurtful comments that people will make about something they don’t understand. Like most people with visible plaques (and for me, crazy dandruff), I’ve experienced many of these, in addition to the stares, looks of disgust, or people going out of their way to avoid touching you. It’s hard to think of anything that could make you feel more isolated or ashamed. I think we do a disservice, however, when we respond by putting it down to ignorance, often belittling the perpetrators by calling them “stupid” or “ignoramuses.” Personally, I don’t actually think ignorance is such a bad thing (bliss, even?). The real problem in these situations is meanness, not a lack of knowledge. I think we need to change the narrative.
I have two best friends who are Family Doctors, and one in particular who loves sending me pictures of exotic and little-known diseases because she knows I’m incredibly squeamish. I don’t think any reasonable person would expect me to know or recognize these diseases in real life, just as I don’t think any person reasonably expects me to know anything about deep sea drilling, or aerodynamics, or how to properly use the macro function in Microsoft Excel. While knowledge is a wonderful thing, we’re not lesser human beings for being ignorant.
Why you gotta be so mean?
The problem with framing medical ignorance negatively is that we don’t talk about what the real issue is: meanness (often born of fear, if you ask me). I’ve had many wonderful interactions with people where they have said something to the effect of “oh my goodness, that looks so painful, what is that?” I explain to them that it’s psoriasis. “Oh, is that like eczema?” Obviously, this is ignorance, but is there anything particularly nasty about it? I’m inclined to say no. I am a huge advocate for psoriasis awareness, and I really hope we get to a place where it’s a recognized term, but let’s stop directing our anger at people’s lack of awareness as if that’s the root of the issue. Psoriasis is to them what Naegleria fowleri is to me… a difficult to pronounce disease that I really don’t know much about (do not google Naegleria fowleri... you will instantly regret it). We say we want people to be more informed, but what does that actually look like? Our own Dermatologists need biopsies to get an official diagnosis, yet we sometimes expect more of strangers than we do of our Doctors! I think it’s more feasible to expect compassion and kindness than to expect medical expertise.
Extending compassion both ways
That all being said, compassion and kindness are two-way streets. I find it helpful to remind myself that in most cases it’s impossible for strangers to know if my skin condition is contagious, or if my dandruff is actually lice. When people make mean comments, it’s usually from a place of fear. In these moments it can be very difficult to be kind, but I try to swallow my hurt and do so anyway. “Oh, no, I have an autoimmune disease that attacks my skin. It’s called psoriasis.” Most people are not even aware of how their words have affected me as they are only concerned with not catching what I have. In a way, I can relate! It is human nature to stare at something out of the ordinary, and it’s completely understandable that people are wary of catching what I have. Even if these people know and are familiar with psoriasis, can we expect them to identify it? Although it can be difficult to practice, treating others the way you would like to be treated can be a powerful thing. Everyone is human, and we are not always the most informed or tactful of people. Try to be kind anyway, even when it is uncomfortable or difficult. And try your best to separate ignorance from cruelty, as they are certainly not the same.
I have a favorite spiritual guru who lived and taught meditation in Burma whose name was S. N. Goenka. He said that on a day to day basis, people will come to you with gifts of happiness, anger, sadness, jealousy, etc. He also said that we can choose to accept these gifts or not! So the next time someone tries to give you the gift of ignorance, or anger, or fear, feel free to politely decline.
How often do you experience brain fog?