All My Cracks: How I Learned To Live With Ichthyosis And Love Myself

A life 2022

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All My Cracks: How I Learned To Live With Ichthyosis And Love Myself
All My Cracks: How I Learned To Live With Ichthyosis And Love Myself

Video: All My Cracks: How I Learned To Live With Ichthyosis And Love Myself

Video: How I Learned to Love Myself \u0026 How You Can Too 2022, November

Metro, rush hour, summer and heat. I'm on my way home from work. I'm wearing shorts and a T-shirt. In thought, I wander around the carriage and accidentally notice how the man on the right is staring intently at my hand. Then he looks for the second hand, finds it, shakes his head slightly. His lips seem to be twisted in a squeamish 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 feet, raise his eyebrows even higher, and stare at his feet for a while. Then he looks at the neck and face and after a couple of seconds stumbles upon my eyes. Immediately she will guess that I have been looking, probably for a long time, he will be confused and turn away. When I turn away, too, he will stare again and only after my second glance, perhaps, will he try to restrain himself and not behave like a child in a zoo. Or maybe we will play cat and mouse with glances until I get tired of it, or until one of us gets off at our bus stop.

If it weren't for fatigue, I would probably wink or smile at him. I do 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 raises his head, and no longer look around, so as not to produce entropy.

My name is Katya, 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 serious, in many countries it is given a disability. I do not have it officially, because it seems like there is no need - my "special needs" are not in benefits, and my life is not hard. Although, maybe this is rationalization.


About daily

We have been together with ichthyosis for so many years that a lot has become routine for me. Right now, as I type the text, my leg is smeared with baby cream and I grimace in pain. An hour ago, while walking on the right foot, a crack appeared until blood. This happens quite often, and you can't guess in advance, so I always carry cream with me - but then I felt it too late, and dust had already got into the wound. I had to interrupt my walk, take the nearest tram and limp home after it. Tomorrow, most likely, it will heal, because my rate of overgrowth is almost like that of Wolverine from X-Men. Okay, okay, a little slower.

Ichthyosis is associated with many purely physical problems and limitations. For example, I don't sweat and my skin doesn't produce oil. I know your first reaction! But believe me, it's not that cool at all. I have practically no heat regulation: I can faint from the heat, I can freeze where it is not cold. But yes, I hardly smell.

I also often itch somewhere, as the skin is constantly renewing itself. If you happen to get sunburned and then peel off, you can imagine what I mean. Unfortunately, nothing really can be done about this itch. Therefore, I waved my hand for a long time and, in general, I calmly scratch myself, trying only to do it not too often, if the situation is not suitable. Unfortunately, sometimes it makes it difficult to sleep. Usually, in such cases, I go to my office and try to do things, or I walk around the apartment and get angry, and the next day I look like a zombie.

I was unshakably convinced that ichthyosis was the cause of all my troubles: if it weren't for it, I would then wow

More water. Ironically, for me, a big fan of splashing, it is better to contact with water and soap as little as possible, because after drying the skin is not able to retain moisture in itself, it shrinks and cracks. Therefore, I do not wash my face in the morning, I very rarely wash my hands (there is a whole system of how not to get them dirty), I hardly go swimming. Oh yeah, and I never take a shower. From this, many are horrified, forgetting the point about sweat and sebum. The problem of dryness after water is partially relieved by a greasy cream.

How, then, to wash? Not often, but slowly and sadly. Those who are familiar with pedicure, imagine: what you do with the heels, you need to do with the whole body, preferably once a week (by the way, this is why I definitely need a bath in the house). It is quite difficult physically and mentally and takes at least 2-3 hours. The delicate washed skin hurts for several hours from any touch, as after a burn. Despite the pain, it is necessary to spread from ears to tail with a special cream with urea, which softens the skin and delays water loss. The cream is made on the basis of acid and stings, an infection, but there are no other options - I tolerate it. For the next 5-6 hours, as a rule, I am not tired, so I choose the day and time of the “general wash” in advance, taking into account other plans.

The skin flakes off - that's why clothes are constantly "dandruff", and even particles of skin remain on the furniture, on the floor and on the people I hug. I also accidentally rip and cling to nylon tights and thin clothes, touching them with my hands or feet. I don’t wear makeup, only in exceptional cases. I do not use caring cosmetics, except for the already mentioned creams - with a 90% probability, the product will work for me in a completely different way than the manufacturer intended. Gel polish on my nails does not hold at all, and biogel lasts a maximum of ten days: something with the structure of the nail plate and the rate of its growth. I do not gain weight and easily lose weight "to transparency" due to high-intensity metabolism and constant loss of protein to "build" new skin. I can’t eat fat - the pancreas does not secrete everything it needs, so it will be bad even after one piece of fat. All this is difficult for me to consider as limitations, because I have always lived like this and had no other reality to compare. Although, maybe this is also a rationalization.

About accepting yourself

I love "X-Men" because the internal and external struggle of "not like that" is shown there aptly and mercilessly. Just like in life, except that we have no superpowers. I have a special affection for the Mystic: of course, my scales are not blue, but you cannot tell from the views of some people on the street. When she was in the form of an ordinary girl, covering her real look with it, Eric told her important: "If you spend half of your resources on looking 'normal', then you will only have half for the rest." I think a similar insight once happened in my life and after it everything changed. Before that, I was unshakably convinced that ichthyosis is the cause of all my troubles: if it weren't for it, I would then wow! I even dreamed where I was healthy. And, waking up, I cried. To make it not so hard, I tried not to be myself and did it quite successfully. Cover up, be ashamed, not accentuate, forget, deny. That is, to reject yourself after everyone else and spend a lot of energy on it.

I remember very well the moment when it ended: I read a comment about the fact that people with "defects" in their appearance should or shouldn't have something, so that those around them would not have any discomfort from their sight. She looked at herself in the mirror, then at her hand. And I realized that it no longer bothers me. I no longer believe the attempts of people to squeeze me out from somewhere because I do not correspond to something there and they have discomfort. My ichthyosis is my only, very important, beloved and valuable skin. And I will no longer allow anyone to deceive me that this is a defect. This is not a defect. It's me.

When I write or say something like that, people often ask me: “How did you manage? How could you not break? " Read in my new book "No way, damn it." In fact, of course, I broke down. Even as a child. And for many years she lived somehow. A disabled child, and even with a bright noticeable "defect", in Russia immediately after birth finds himself in such conditions that he simply has no chance to grow up without psychological trauma and deep personal problems. So I didn't. I was persecuted and avoided by children, my relatives were ashamed, strangers constantly wounded me with violent reactions and advice, boys refused to meet with me.In addition, I could not have a bunch of products, there was no good caring means … The whole world around me literally shouted that there was no place in it for people like me.

When I think about it, I want to take my little one by hand and rock myself for a long, long time. It's good that I still had some resources and was hardly compensated through them. And I believed in help, so that as an adult I was able to go to psychotherapy. Then the healing process started, and it is probably still going on. So far, I have lived in harmony for fewer years than without it, but it's worth it.


About people

People, of course, watched and are always watching. Some even nudge their companions and friends with their elbows so that they can also watch. Usually I try to ignore it - I take care of myself, but it doesn't always work out. What is much worse - some people just need to gaze, they want to say something, talk, advise, ask around or just gasp. Whether I want to talk to them and what are my needs at the moment, they are often not interested.

When I lived in Russia, no exit to the street was complete without such "contact with extraterrestrial civilization", which was very annoying. Since I moved to Prague, this problem has almost disappeared, they hardly look at me and do not approach me, with the exception of compatriot tourists. In Europe, in general, with human delicacy and personal boundaries, it is somehow better.

In my blog, I periodically describe the situations that I find myself in due to ichthyosis. Commentators write: “Okay, it became clear how not necessary. So how should it be?" Of course, I would like to write instructions for everyone. But I don’t know if it’s possible, because people are different, and so are people with disabilities. However, it seems to me that there are some common things.

First, it is better to keep your existential horror to yourself. Many people, having met with something like an illness or a physical feature, instantly try it on themselves or their loved ones, experience strong emotions and just as instantly throw them out on the person who became the reason for them. Most people understand their reaction as empathy and are offended if it is not accepted. I feel the fear of others and the experience of the absolute impossibility of living THIS - accordingly, the need to almost calm down. Some absurdity, is not it?

Secondly, there is no need to try to "steer towards the positive" all the time. The psyche of modern people is arranged in such a way that we really, really need a happy ending, at least a small one. And sometimes they literally start to beat about me in order to get it. So that's it. Sometimes answering with a simple "I see" can be much more important than comforting and looking for good in bad. Because it means that you are ready to stay close not only in joy.

I don't feel my body is bad, worthless, or defective. I feel it as different from the majority, but not "worse", but "different", while very beautiful

Thirdly, disabled people do not exist so that others can “be enlightened” at their expense. When I go to the store or fly on vacation, I usually do not plan to be a simulator for other people's insights ("Oh, compared to you, my problems are so funny!"). Please share this with your therapists, 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 certain magazine wrote about me like this: "Despite ichthyosis, I was able to get married, be happy and even give birth to a child!" Well, go crazy now, I thought. If you come across something like that, try substituting any other characteristic and see how ridiculous the phrase begins to look. Those who are not tormented by discrimination are not hurt by the absurdity, but rather amused. With us, it's a different story: we might want to laugh, but we can't.

The joy that today a disabled person is less like a disabled person is not always appropriate. This happens to me regularly.Basically, they compliment that today my skin flakes less, and is lost when I'm 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 the participation of "incentive".

And remember there are other topics of conversation. To strike a balance between “I don’t ignore” and “I don’t get stuck”, you can talk about the problem only when it comes up or when the situation implies your help. Before you is a whole interesting person, he has a lot of other things to chat about. Do not constantly confront him with the fact that the disease is the core of everything and you cannot be distracted from it in any way.

The rest of the people, in my opinion, are good. Having got to know me at least a little, the overwhelming majority cease to see the "curiosity on the legs", behave friendly and quite adequately. They offer help, are interested, sympathize, they can easily keep up a conversation if I feel like talking about something specific or complaining. I am very grateful to all of them, the normal attitude of people makes my life much easier. Especially loved ones. It is important to feel that you are loved with all the cracks - I definitely have no shortage of that.

About the influence of the disease

Once upon a time I had a memorable conversation with a friend about the body: I ​​said that I did not feel my body was bad, useless or defective. I perceive him as different from the majority, but not “worse”, but “different”, at the same time very beautiful. Not disabled, but differently abled - I don't know how to successfully translate this into Russian.

Ichthyosis has made me who I am, and these are not just words. For example, I am short and thin, shorter than my parents and in general 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 during childhood, plus the high-intensity metabolism that I have already mentioned. It is also clear that the face and hands look specific - not only because of peeling and dryness, but also because of pronounced folds, weak tone and lack of subcutaneous fat. Probably, it is worth adding to this list a high tolerance for physical discomfort - years of life with various bodily problems have done 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, I had to then separately treat and work on in psychotherapy. From personal resources, I had mainly intelligence, so I learned to read and analyze early and began to disappear headlong into books, hiding from the hurting reality.

There are other clear consequences of disability: the desire to help others, which I feel as a mission; high emotional intelligence and empathy; a tendency to introspection; a very modest reserve of strength, like any post-traumatic person, and so on. Probably, the treatment of trauma with psychotherapy and its effects for me personally, as well as the choice of the profession of a psychotherapist 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 that right now it is dictating to me some thought or action, or it affects my perception. Although it happens all the time.



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. Even in the USSR there was no culture of psychological help, so I started 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 bunch of our problems (and there are, in general, a lot of them already). I have almost a hundred sad stories of interaction with people, from which faith in humanity melts 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, 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 proceeding very slowly. Resources are scarce even for self-support, let alone minimal mental effort for someone else. Therefore, any hints that there are weaker and more vulnerable groups and it would be nice to observe something in relation to them, in many arouse aggression and a desire to "unsee".

I regret that the emerging media trend of acceptance of disability is beginning to deviate towards its fetishization. This also affected me - there was an offer to film naked with a snake. It is probably easier for society to adapt to something by making an attractive picture out of it, but such a picture is deeply wrong. There is nothing particularly attractive about disability - it is just a feature, a fact that only needs to become visible. But visibility is not so simple. For example, my Facebook column saying I want to be visible along with ichthyosis got more “Hide Post” clicks than all the posts put together so far. So people somehow don't want to see disability, without embellishment and sexualization.


“Mom, I want to have the same hands! Your skin is very beautiful, but mine is not at all like that! " - my nine-year-old daughter came to wake me on this lazy Sunday morning, climbed onto the bed and squeezed my hand as I tried to wake up.

“It happens that mom and daughter are somewhat different, hare, but this does not mean that only one is beautiful and the other is not. You also have very beautiful skin, look. So smooth. I really like it”, - I take her warm foot in mine and kiss each finger.

If someone outside could hear this dialogue, he would probably be confused. My daughter is blonde with healthy and smooth skin with a light golden hue. My hands for most strangers, so to speak, do not look like the ultimate dream. Nevertheless, everything is correct in our dialogue: my daughter sees every day that I am happy, satisfied with my life and glad to be reflected in the mirror. Of course, she wants to be the same! Even if it sounds a little unexpected to someone.

Fifteen years ago, if I had a daughter and she said something like that, I would absolutely definitely react differently. I would have been horrified and ashamed, perhaps angry. I would try to dissuade: “What are you, how can such hands and such skin be beautiful? What a blessing that you are not like me! You are healthy! " Thus, of course, I would let her understand: you shouldn't want to be me, to be me so bad that I myself don't want to. It's good that today I don't think so anymore. A lot has changed, and today I am just warm and pleasant from her words, without any additional thoughts. Except, perhaps, this one: she needs to be like me in only one thing - in relation to herself. And then everything will be fine.

Photos: Vladislav Gaus / author's personal archive

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