“OH MY GAWD! What’s happened to your face?!?!” This unexpected dramatic exclamation from my new acquaintance, right after her “Hi! How are you?,” makes me flinch involuntarily.
“Well…I’ve got ichthyosis… Why?… ”
“OOPS …. …. …. Please don’t worry about it! It will go away soon!!! ” My acquaintance obviously was expecting an ordinary reply, something like “It’s a sunburn” or “Weekly peeling at the cosmetologist’s didn’t go well”. And now she tries to comfort and soothe me immediately.
“Well, it won’t. It’s incurable. But I am not worried about it at all” - not a smart reply, but I have to say something.
“POOR THING!!! Tell me honey, what do you do for THIS to look BETTER???”
“Uhm… better? ” I find a pocket mirror in my handbag and take a look. “What do you mean by better? This is my regular face. ”
“….!!!” – A sudden hopelessness in the script of our dialogue and the apparent tragedy of my existence is unbearable for my acquaintance. Speechless, she simply abandons the conversation and never calls me back.
This is a real situation; I haven’t made it up. Such conversations continue happening to me and I understand how uncomfortable they are for people I speak to. They seem to feel tormented by my answers that don’t give any room for a happy-ending. They seem to feel guilty and ashamed for their questions which led to “touching the vulnerable”. They seem to remember this situation for a long time. And they seem to escape from the conversation in the most panicked way and avoid future contact with me, which is really sad and unfair since everyone started with good intentions.
So, I decided to be the person who is gonna give you important knowledge for handling those situations well.
Different people have a different understanding of what is normal and what’s not (and also what is good, pleasant and right). Sometimes the difference is really huge, like living in a different universe and not having any idea of the existence of the other. This lack of knowledge makes people use their own coordinate system for any aliens they meet. The coordinate system of an average person might indicate that it’s good to be healthy and beautiful, it’s bad to be sick and ugly or substandard or irregular. Kids please don’t be like that.
My universe does exist, and is a bit different. First of all, it’s good to be me. I am satisfied with my body and all its limitations and peculiarities. I know it well and I never perceive it as “bad”, “ugly” or something though I’m aware of having a disability with an unusual look. It’s just me though. I’ve never had any other body and look - that’s why. If you ask me to describe myself briefly, I’ll come up with something like: I am a nice looking, 36-year-old Russian woman with dark hair and ichthyosis.
Do you get the idea? Ichthyosis is a part of me and how I identify. It’s so old and familiar that it is like “I have a skin” for me.
When someone wants to compliment me with “It’s almost invisible” or “You look good today. No one could tell you from a healthy person”, or “This doesn’t look like a serious problem at all”, or “This is just skin, forget about it!”, I feel puzzled.
People who are tactless sometimes come up with, “You are able to hide it. There’s no need to show it!” or “Why don’t you choose a photo without THIS.”
My strange feelings aren’t coming from the falsity of some of those statements (it’s really hard not to notice my skin problem, you know, – please Google ichthyosis and you’ll get what I am talking about).
My feelings are all about a different thing. Something has been a part of me for many years. Like a hand or a leg. But some people like the fact that it is not obvious sometimes! Seems like they actually don’t want to see it.
I get really confused when I try to reply in a non-offensive and polite way.
Should I be happy for people who are apparently more comfortable when I look more ‘normal’ than usual?
Or should I share my feelings about the perceived message ‘people want a physical part of me to be hidden as much time as possible’?
Or should I warn people that I’m used to look like that and be like that, which means I have no special feelings for being accidentally mistaken for a healthy person?
I assume I’m not the only one with this kind of confusion. People who start a conversation often feel confused, too. I’d like to give them a more neutral phrase as a part of the phrasebook “How to talk to aliens” and an option for situations where they may want to say something but are afraid to sound too normative and cause an awkward reaction. Here it is:
“I always have strong feelings for you sweetheart.”
If you start with this, you can easily adjust your next phrase to the person’s reaction and then specify (or not specify) what exactly makes you feel like that. This means you can stay in the conversation without any awkwardness. That’s really magical!
Recently I was rethinking this problem and realized that it’s not only about disability or facial/physical difference. This sort of indifference is actually very popular nowadays. People want certain processes, facts and conditions to stay out of their vision.
A mother of three is told that her body shape is just perfect as if she didn’t give a single birth.
LGBTQIA+ people are told that they don’t look like LGBTQIA+ people and it makes their presence more comfortable for ‘normal people’.
People with extra weight are told that certain clothes suit them because they make them look thinner (which means ‘better’).
Feminists are told that they might have made a better public impression if they looked more like a “regular women” and weren’t focused only on women’s rights.
People with different diseases are told to stop whining and to keep their struggle to themselves.
Victims of violence are told to move on, forgive and let go.
But the problem is not all people are as concerned about hiding this part of themselves as you are concerned about not seeing it. On the contrary, many people choose to identify through it despite its “negative points”. Because it makes them who they are. Because they are proud of it or, at least, aren’t ashamed for it.
It is crucial to give other people an opportunity to identify through different aspects of their lives, even if you think that you’d never do that yourself. It is crucial to acknowledge these aspects and to be able to see them in others without putting any glamour on them. Because there is a lot of courage, self-support and care in the act of embracing one’s own features. Your reaction can also be supportive and caring if you say ‘I see you’.
Can you see me?
I am Ekaterina, a 36-year-old Russian woman with ichthyosis.