All my cracks: How I learned to live with ichthyosis and love myself
Metro, rush hour, summer and heat. I'm going from work. I am wearing shorts and a t-shirt. Thoughtfully, I look around the car and accidentally notice how the man on the right is staring at my hand. Then he looks for the other hand, finds it, shakes his head slightly. It seems that his lips are twisted in a grim grimace. Or is he surprised? Never mind. All this is so familiar that I can predict what he will do next. Now he will turn his gaze to his legs, raise his eyebrows even higher, and for a while he will pull his feet to his feet. Then he will look at the neck and face and in a couple of seconds he will come across in my opinion. He immediately guessed that I was looking, probably, for a long time, confused and turned away. When I turn away too, he will stare again and only after my repeated glance will he possibly try to restrain himself and not behave like a child in a zoo. And maybe we will play cat and mouse with looks, until I get bored, or until one of us gets off at our stop.
If it were not for fatigue, I would probably wink at him or smile. I do it so often when I feel good - then situations like this amuse me. But today there are no positive emotions. Therefore, I look away a second before the man lifts his head, and no longer look around, so as not to produce entropy.
My name is Kate, I am 35 years old, and I have ichthyosis. It is an incurable skin disease that affects the entire skin of the body. The disease is considered severe, in many countries it is disability. I don't officially have it, because it seems like there’s no need - my “special needs” are not in privileges, and it’s not hard for me to live. Although it may be rationalization.
About daily
I and ichthyosis have been together for so many years that much has become routine for me. Right now, while I am typing the text, my leg cream is smeared on my face and I wrinkle in pain. An hour ago during a walk on the right foot there was a crack to the blood. This happens quite often, and you cannot guess in advance, so I always carry a cream with me - but then I felt too late, and dust had already entered the wound. I had to interrupt the walk, get on the nearest tram and limp home after it. Tomorrow, most likely, it will heal, because the rate of overgrowing is almost like that of Wolverine from X-Men. Well, okay, a little slower.
Ichthyosis is associated with many purely physical problems and limitations. For example, I do not sweat and my skin does not emit fat. I know your first reaction! But believe me, this is not so cool. I have practically no heat regulation: I can faint from the heat, I can freeze where it's not cold. But yes, almost no smell.
I also often have something scratched somewhere, as the skin is constantly updated. If you happen to burn in the sun and then peel off, you can imagine what I mean. Unfortunately, nothing can be done with this itch. Therefore, I gave up my hand a long time ago and, in general, I calmly scratch myself, trying only to do it not too often, if the situation is inappropriate. Unfortunately, sometimes because of this it is impossible to sleep. Usually in such cases I go to my office and try to do business or walk around the apartment and get angry, and the whole next day looks like a zombie.
I was firmly convinced that ichthyosis was the cause of all my troubles: now if it had not been, I would have been uh!
More water. Ironically, to me, a big lover of splashing, it is better to have as little contact with water and soap as possible, because after drying, the skin is not able to retain moisture, it coats and cracks. Therefore, I do not wash my face in the mornings, very rarely wash my hands (there is a whole system, how not to soil them), I hardly go swimming. Oh yeah, and never take a shower. From this, many are horrified, forgetting the point about sweat and sebum. The problem of dryness after water partially removes fat cream.
How, then, to wash? Infrequently, but slowly and sadly. Those who are familiar with a pedicure, imagine: what you do with your heels, you need to do with your whole body, preferably once a week (by the way, that's why I definitely need a bath in the house). It is quite hard physically and mentally and takes at least 2-3 hours. Gentle washed skin for several hours hurts from any touch, like after a burn. Despite the pain, it is necessary from ear to tail to smear with a special cream with urea, which softens the skin and delays the loss of water. The cream is made on the basis of acid and pinching, infection, but there are no other options - I suffer. The next 5-6 hours, I, as a rule, no fatigue, so I choose the day and time of the "general cleaning" in advance, taking into account other plans.
The skin is peeling off - so the clothes are constantly in dandruff, and more pieces of leather remain on the furniture, on the floor and on the people I embrace. I also accidentally tear and grab nylon pantyhose and thin clothes, touching them with my hands or feet. Do not wear makeup, only in exceptional cases. I do not use caring cosmetics, except for the already mentioned creams - with a probability of 90% the tool will work for me completely differently than the manufacturer intended. Gel polish on my nails does not hold at all, and biogel is a maximum of ten days: something with the structure of the nail plate and the speed of its growth. I do not gain weight and easily lose weight "to transparency" due to the high-intensity metabolism and the constant loss of protein on the "construction" of new skin. I can not eat fat - the pancreas does not release all that is necessary, so it will be bad even after one piece of fat. It is difficult for me to consider all this as restrictions, because I always lived like that and had no other reality to compare. Although, perhaps, this is also rationalization.
About accepting yourself
I love "X-Men" because the internal and external struggle "is not such" is shown there aptly and mercilessly. Just like in life, except that we have no supernormal abilities. I feel a special tenderness for Mystic: of course, my scales are not blue, but according to the views of some people on the street you cannot say. When she was in the form of an ordinary girl, covering her real appearance with him, Eric told her the important thing: "If you spend half of your resources on looking normal, then you will have only half left for the rest." I think a similar insight happened in my life and everything changed after it. Before that, I was firmly convinced that ichthyosis was the cause of all my troubles: now if it hadn’t been there, I would have done it! I even had dreams where I am healthy. And waking up, I cried. To make it not so hard, I tried not to be myself and did it quite successfully. To hide behind, to be ashamed, not to accent, to forget, to deny. That is, to reject oneself after all and spend a lot of energy on it.
I remember very well the moment when it was over: I read a comment about the fact that people with “defects” in appearance should or shouldn’t have something there, so that others wouldn’t have discomfort from their appearance. I looked at myself in the mirror, then at my hand. And I realized that it no longer hurts me. I no longer believe the attempts of people to squeeze me from somewhere due to the fact that I do not correspond to something and have discomfort. My ichthyosis is my only, very important, beloved and valuable skin. And I will not allow anyone else to deceive me that this is a defect. This is not a defect. It's me.
When I write or say something like that, they often ask me: "How did you manage? How could you not break?" Read in my new book "No, damn it." In fact, of course, I broke down. Back in childhood. And for many years she lived somehow. A disabled child, and even with a bright, noticeable “defect”, in Russia immediately after birth is in such conditions that he simply does not have a chance to grow up without psychological trauma and deep personal problems. So I did not have. I was poisoned and avoided by children, my relatives were ashamed, the strangers constantly wounded me with violent reactions and advice, the boys refused to meet me. In addition, I could not have a bunch of products, there were no good caring means ... The whole world around me literally shouted that there was no place for people like me.
When I think about it, I want to take myself a little on the handles and long to rock. It is good that I still had some resources and was hardly compensated through them. And she believed in help, so that already an adult could go on psychotherapy. Then the healing process started, and it still probably goes. So far, I live in harmony less years than without it, but it's worth it.
About people
People, of course, always watched and watched. Some even push elbows of their companions and friends to look, too. I usually try to ignore it - I take care of myself, but it does not always work. What is much worse - some people lack only the gaze, they want to say something, talk, advise, ask around or just chase. Do I want to talk with them and what are my needs at the moment, they are often not interested.
When I lived in Russia, not a single exit to the street was complete without such “contact with an extraterrestrial civilization,” which was very annoying. Since I moved to Prague, this problem has almost disappeared, they barely look at me and do not fit, with the exception of fellow tourists. In Europe, in general, with human delicacy and personal boundaries it is somehow better.
In my blog, I occasionally describe situations in which I find myself due to ichthyosis. Commentators write: "Well, it became clear how not to. And how to?" Of course, I would like to write an instruction for everyone. But I don’t know if it’s possible, because people are different, and people with disabilities, too. True, some common things, I think, is.
First, it is better to keep your existential horror to yourself. Many people, having met with something like a disease or a physical trait, instantly try it on themselves or their loved ones, experience strong emotions and instantly splash them on the person who became the reason for them. Most understand their reaction as sympathy and are offended if they do not accept it. I feel the fear of others and the experience of the absolute impossibility of living in SO - accordingly, the need to almost calm down. Some kind of absurdity, isn't it?
Secondly, you do not need to try all the time "to taxi to the positive." The psyche of modern people is arranged so that we really, really need a happy ending, even a small one. And they sometimes literally start beating about me to get it. So here. Sometimes answering simple “Clear” can be much more important than comforting and looking for the good in the bad. Because it means that you are ready to stay close, not only in joy.
I do not feel my body is bad, unfit or defective. I feel it as different from the majority, but not “worse”, but “different”, while very beautiful.
Thirdly, people with disabilities do not exist so that others can be “enlightened” at their expense. When I go to the store or fly to rest, I usually do not plan to be a simulator for other people's insights ("Oh, my problems are so funny compared to you!" Or even "How fortunate that I am healthy, I value life so little!" ). Please share this with your psychotherapists, family, friends, and not with us, even if you are very grateful (but under this article you can share insights! I will be pleased).
Discrimination "in a positive way" is also discrimination. A magazine wrote about me like this: "Despite ichthyosis, I could get married, be happy, and even have a baby!" Well, fuck up now, I thought. If you meet something like this, try to substitute any other characteristic and see how ridiculous the phrase begins to look. Those who are not exhausted by discrimination, the absurdity does not hurt, rather amuse. There is another story with us: we might want to laugh, but we cannot.
The joy of the fact that today the disabled is less like a disabled person, is not always appropriate. It happens to me regularly. Mostly compliments are made that today my skin is less flaky and is lost when I am not happy about it. Not all of us seek to hide a part of ourselves, so if this part gives you discomfort, try to figure it out without an “incentive”.
And remember that there are other topics for conversation. To strike a balance between “not ignoring” and “not getting hung up,” you can only talk about a problem when it comes to it or when the situation implies your help. Before you is a whole interesting person, he has plenty of other things to talk about. Do not constantly put it before the fact that the disease is the core of everything and you can’t be distracted from it.
The rest of the people, in my opinion, are good. Having recognized me at least a little, the overwhelming majority ceases to see "a curiosity with legs", behaves friendly and completely adequate. They offer help, are interested, sympathize, can easily keep up the conversation if I take in head to talk about something specific or complain. I am very grateful to them all, the normal attitude of people makes my life much easier. Especially close. It is important to feel that you are loved with all the cracks - I definitely have no shortage of this.
About the effect of the disease
Once upon a time I had a memorable conversation with a friend about the body: I told me that I did not feel my body to be bad, unfit or defective. I feel it as different from the majority, but not “worse”, but “different”, while very beautiful. Not disabled, but differently abled - I don’t know how to translate this successfully into Russian.
Ichthyosis has made me who I am, and these are not just words. For example, I am short and thin, lower than parents and in general of all relatives, I have small palms and feet and almost no fat on my body. This is a direct consequence of the disease: a strict diet in childhood plus a high-intensity metabolism, which I have already mentioned. It is also clear that the face and hands look specifically - not only because of the peeling and dryness, but also because of the pronounced folds, weak tone and lack of subcutaneous fat. It is probably worth adding to the list a high tolerance for physical discomfort - the years of life with various bodily problems did their job.
When you are a person with such an interesting set of everything, then your personality will inevitably meet with the outside world, polish about it and grow various defenses and compensations. My psyche was compensated through narcissism and perfectionism, which, of course, then had to be separately treated and worked on psychotherapy. From my personal resources, I had mostly intelligence, so I learned to read and analyze early and began to disappear into the books, hiding from the wounded reality.
There are other obvious consequences of disability: the desire to help others, which I perceive as a mission; high emotional intelligence and empathy; propensity for introspection; a very modest supply of power, like any post-trauma, and so on. Probably, the treatment of trauma by psychotherapy and its effects for me personally, as well as the choice of the psychotherapist's profession for myself, is already the next level of influence. At the same time, I almost never remember and do not feel that I have ichthyosis, and right now he is dictating to me some thought or action, or it affects my perception. Although it happens all the time.
Regrets
There are a few things that I regret. For example, that in my childhood it was not customary to tell children the truth about their illnesses, which delayed my adaptation for years. Back in the USSR there was no culture of psychological help, so I began my journey to myself rather late. I also regret the harshness of the Russian-speaking world in relation to all "not so", which leads to a bouquet of our problems (and there are quite a few of them, in general). I have almost a hundred sad stories of interaction with people, from whom faith in humanity is melting like snow in a hot desert. For some reason, the presence of a disease or some of its consequences is still a reason to dominate, to show aggression, shame, say outright disgusting, aiming to try to hurt more painfully.
I regret that we all have few resources, and because of this the development of real tolerance is going very slowly. Resources are not enough even for self-support, not to mention the minimum mental effort for someone else. Therefore, any hints of the fact that there are weaker and more vulnerable groups and it would be nice to observe something in relation to them, many of them cause aggression and a desire to “see it through”.
I regret that the emerging media trend of accepting a disability begins to shy away from its fetishization. It touched me too - there was an offer to play naked with a snake. It is probably easier for society to adapt to something if you make an attractive picture out of it, but such a picture is profoundly wrong. There is nothing particularly attractive about disability - it’s just a feature, a fact that is enough to become visible. But visibility is not so simple. For example, my Facebook column, that I want to be visible with ichthyosis, scored more "Hide Publication" clicks than all the records before taken together. So, it’s people who don’t want to see disability, without embellishment and sexualization.
"Mom, I want my hands to be the same! Your skin is very beautiful, but I do not have that at all!" - a nine-year-old daughter came to wake me up on this lazy Sunday morning, climbed on the bed and squeeze my hand while I try to wake up.
"Бывает, что мама и дочка в чём-то не похожи, заяц, но это же не значит, что только одна красивая, а вторая нет. У тебя тоже очень красивая кожа, смотри. Такая гладкая. Мне очень нравится", - я беру её тёплую лапку в свою и целую каждый пальчик.
Если бы этот диалог мог слышать кто-то посторонний, то он бы, наверное, растерялся. Моя дочь - блондинка, обладательница здоровой и гладкой кожи светло-золотистого оттенка. Мои же руки для большинства незнакомых людей, так сказать, не выглядят пределом мечтаний. Тем не менее в нашем диалоге всё верно: дочка каждый день видит, что я счастлива, довольна жизнью и рада отражению в зеркале. Конечно, ей хочется быть такой же! Даже если это для кого-то звучит немного неожиданно.
Fifteen years ago, if I had a daughter and she said something like that, I would absolutely have reacted differently. I would be horrified and shame, perhaps I would be angry. I would dissuade: "What are you, how can such hands and such skin be beautiful? How lucky you are not like me! You are healthy!" Thus, of course, I would let her know: you should not want to be me, to be me so badly that I myself do not want to. Well, that today I do not think so. Much has changed, and today I just feel warm and pleasant from her words, without any additional thoughts. Except, perhaps, this one: she needs to be like me only in one thing - in relation to herself. And then everything will be fine.
Photo: Vladislav Gaus / author's personal archive
