RHEUMATOID ARTHRITIS IS AN AUTOIMMUNE DISEASE that primarily affects the joints and is more common in women. If arthritis begins in childhood, it is called juvenile ; the disease can proceed in different ways, and its causes are still unknown. Both rheumatoid arthritis itself and the drugs used to treat it lead to noticeable changes in appearance and physical limitations. Psychologist Dasha Krayukhina talks about life with this disease and how not to talk with people who have a similar diagnosis.
About disease and bureaucracy
I am twenty-six years old, and twenty-five of them I have rheumatoid arthritis. The onset of the disease was completely “classic”: pain appeared, then a high, near forty, temperature, which did not go astray. This is an autoimmune disease in which very severe inflammation develops – therefore the symptoms are pain and high fever. It was 1993, the healthcare system was falling apart along with everything else, but I was lucky – the diagnosis was made in just six months. I know that in other families this process could last for two years; I think it played a role that we lived in Moscow, and the connections between dad and grandfather also helped.
At first I was in an infectious diseases hospital, then someone advised me to go to the Institute of Rheumatology on Kashirka – and there they immediately realized that I was their patient. Hormone therapy in large doses was started very quickly – it is still the most effective means of suppressing such autoimmune processes. True, hormones suppress everything else, growth slows down, so people with RA have a characteristic appearance – you are always one and a half or two heads shorter than your peers, your face becomes round and plump.
The treatment goes on all my life, until the age of twenty-three I received hormonal therapy. Now a new class of drugs has appeared – biological agents that act on failures in the immune system in a targeted manner; thanks to these drugs, I was able to cancel hormones. I get treatment once a month, these are droppers; one dose of such an intravenous drug costs about 70 thousand rubles. Treatment is carried out at the expense of the state, that is, you do not need to pay, but the bureaucratic process leaves much to be desired. It is necessary to receive monthly prescriptions through the head of the polyclinic, then go to formalize and confirm them at the rheumatological center, then for the drug at a special pharmacy. You can enter it only under the supervision of a rheumatologist, that is, every time you go to the hospital for a day, and this is still a bunch of pieces of paper. The drug is serious, and to control undesirable effects, you need to donate blood every month and be screened for tuberculosis every six months.
People with RA have a characteristic appearance – you are always one and a half to two heads shorter than your peers, your face becomes round and plump
I underwent three joint replacement surgeries – two of my hip and one knee were replaced. If you are sick from childhood and take hormones, then, as a rule, by the age of twenty, it is time to prosthetics – they are completely destroyed, cartilage is erased in them. This is also done according to a quota, otherwise it will not be less than a million rubles. The hip joints were in terrible condition, I understood that they definitely needed to be changed; and after their prosthetics, I had a very strong aggravation with my knees – severe inflammation, edema. One knee was operated on, the second is ahead. I realized that this should be done in a relatively warm season: joints need to be developed, and in winter it is impossible to walk, there are no such clothes and shoes that bandaged legs fit into. In the spring after the operation, I went out in slippers, walked around the hospital.
I was lucky with my constitution, I have a good muscle corset and strong bones. Large, strong muscles kept the knee in place even when there was almost nothing left of the joint. Of course, I practice, I do exercises, I go swimming before (and after) operations. Swimming helps very well, especially after operations, it kind of lets the body get used to it and understand that this joint is now mine.
The disability had to be renewed first, but at the age of nineteen it was made indefinite. For disability, an individual rehabilitation plan is also given. Everything is inscribed there – including technical means (crutches, strollers), which are given free of charge. I wanted to get all the necessary things in the apartment, a device that helps to bend my leg, and develop a joint after the operation, a normal stroller so that I can walk in the park after operations. But, unfortunately, the commission looks at you as if you want to deceive everyone – and in the end they didn’t give me a wheelchair, they said that it was only with a disability of the first group.
About life and pain
I walk with support on a cane or an elbow crutch. For long distances – only a taxi, but it does not save everywhere: there are uncomfortable yards, where in winter it is impossible to walk even two meters on your own. Then you need to either change plans, or come with one of your friends so that there is someone to help, or postpone business until March-April.
Whether I can use transport depends on my condition. Now six months have passed since the last operation, and in the summer I was at the sea, and it heals me very much – so now I can go down to the subway and get out of it. But as soon as the frost begins, I will not risk it. I am well versed in land transport, you need to lay more time on it, but you do not need to go down and up stairs. We specially rented an apartment close to work, and in good condition I can walk for ten minutes. After the operation I took a taxi – in two minutes and one hundred rubles.
Pain is constantly present in my life, it always goes in the background. After three operations, life changed a lot, movements appeared that were not there. The pain in these joints is gone, but even there muscle pain remains, the muscles and cartilage take a long time to fall into place. Before the operations, it was such that the knee jammed: I bent it, and could only straighten it tomorrow. So there can be no long-term planning – or rather, maybe, but things often go wrong.
A person without arthritis can
squat, bend over to the floor. Sometimes, to thoroughly wash the floor, I lie on my stomach on a low stool
A person without arthritis can squat down, stand on a stool, take something without hesitation, without paying attention to it. Bending down to the floor, bending over to the child and helping him get dressed – for people with RA, this is a whole business that requires separate resources and time. Sometimes, to thoroughly wash the floor, I lie on my stomach on a low stool. With the girls with whom we know each other from childhood in hospitals, we have a chat “Sisters of RA”, and we often discuss everyday life; many questions, of course, are solved by the cleaning service or things like a robot vacuum cleaner.
Standard kitchen furniture is inconvenient for small stature – and you cannot stand on a chair. Getting something off the top shelf is an adventure. I live with my sister, she is one and a half years younger; we both work, that is, we are not always at home at the same time. And it is important to arrange life comfortably for me so that she does not mechanically remove something from the lower shelves to the upper ones. Sometimes mom comes, opens the closet and wonders: “Why are your shelves empty and everything is piled on the bottom?” And the sister replies: “Mom, you forgot what it’s like to live with hobbits.”
I am 150 centimeters tall – I am tall for someone with juvenile rheumatoid arthritis; the height of my friends is from 130 to 155 centimeters. Someone manages to dress in children’s stores – but not me, because I have very large breasts and a typical “female” figure. It is also very difficult to choose shoes: the leg with arthritis is wide, because the joints swell, but at the same time I wear size 34 (and this is more than many girls with RA). Children’s shoes are usually too tight. There are specialty shops, but they sell very strange things – for example, some creepy boots with stiletto heels in sizes 33-34. So all my life I have to invent something.
I am a psychologist at the College of Architecture and Design, teaching future plumbers and electricians. This is an experimental educational platform, we are working on the self-determination of students, we are changing the paradigm of education: we have quite specific students, in whose families the profession is perceived as a means of survival and earning, not self-realization, and we are trying to change their attitude. We work so that a person can set goals, achieve them, understand what he wants, what his activities can give to the world.
And my second job is support groups for parents of children with disabilities, physical disabilities, and musculoskeletal diseases. There are many cool places and support groups in Moscow for parents of children with mental problems, but there is no such thing for systemic diseases. My colleague, Irina Kutilina, who is also a psychologist and has been ill since childhood (she has a mixed connective tissue disease, MCTA), have written a meeting program and are slowly starting to develop it. Now we are recruiting parents into groups. We found a place where we will conduct them, it will be free for parents; we also want to create a school for patients somewhere in a children’s hospital. Perhaps you need to conduct classes online or do a webinar for those who live in other cities.
On the one hand, it will be a community to support each other, see different experiences, understand that you are not alone in your problems. On the other hand, we will give specific knowledge about what the child lacks, what difficulties he will have in connection with the illness and attitude towards it, how to build communication with the child and his illness. Adolescents have the most problems: they want to grow up and separate from their parents, but when you are on crutches, a wheelchair, medication, it is very difficult and sometimes impossible, and society does not help in any way. Parents usually have very strong anxiety, which also prevents the child from letting go.
About help and the attitude of others
I’m not ashamed to ask for help – although this is also a coping story. Not always in general there is a mood to approach a stranger, sometimes you want to be silent. Many of my friends cannot and are ashamed to ask for help. We all have a constant realization that we are very different from most people, and when addressing “normal” people, you are always ready for some strange reaction – what is it, who is it here? Once again, I don’t want to remind myself of myself, I’m afraid to face questions, misunderstanding, pity. But at the same time, I recently began to understand that such a picture is in our head, and it is far from reality.
In fact, people often do not notice the disease at all, do not even believe. The taxi driver was somehow very surprised, he thought that I was with a stick, because I injured my leg or something else – such a young girl cannot have a disability! We (people with RA) are used to looking at our joints, being surrounded by people with the same disease. We notice it, scan it, understand why a person is limping in one way or another. And people who have not encountered this do not notice – for them I am just a short girl.
Most people are friendly, helpful and willing to support or sympathize. True, not everyone knows how to do it correctly – you often hear something like “nothing, my friend was also so sick and recovered”. I also often receive admiring reviews on Instagram, what a fine fellow I am and how a person likes my blog, and then there is a phrase that nullifies everything: “I thought I had problems – but it turns out that there are problems like you, and you can live and not lose heart. ” This makes me uncomfortable.
With diseases affecting speech (for example, cerebral palsy), others usually believe that mental activity is also impaired. There is no such thing with RA, but everyone thinks that you are a child – short and with a round face. Now I rarely come across this, but before I was constantly called a girl, poked, lamented: “Oh, wow, a girl with a stick.” I remember how, at the age of fifteen or sixteen, I rode in the subway, looked at a boy of about the same age and realized that he most likely perceives me as an eight-year-old child. At the age of twenty I became interested in photography, saw a group of teenagers, pointed the camera in their direction, and they: “Girl, don’t, take the camera away.” They can stop somewhere where there is an age limit for entry. In general, they are constantly perceived as a child – and for me it will never be a compliment that I look young, this is the pain of my whole life.
About visibility and sexuality
In a group for parents, I always say: the perception of oneself is formed not because you have a certain body, but because you are included in the social context with this body. And this context tells sixteen-year-old Dasha: “Girl, you are eight years old.” The child builds his perception of himself on all these words – and it is very important that the maximum support comes from the parents. My mother told me all my life that I am very strong, smart and cool. She introduced me to the idea that a person may have physical difficulties, pain, limitations, but due to this, a person becomes even smarter, he sees life more broadly. This topic was constantly discussed with us, and I quickly realized that when children start calling names (about height or cheeks) – this is not my problem, this is the problem of these children, this is their limitation and bad manners.
I saw the opposite stories – when the girls in the family were told all the time: “Poor girl, but nothing, we will buy trousers or a long skirt so that the knees are not visible.” Now my friends after joint operations are told: “The scar is, of course, terrible, but nothing, you can cover it up.” Of course, if your whole life takes place in such a context, I don’t know how you can love yourself and treat your body well. As a result, a person considers his body to be terrible, scary, disgusting, one that needs to be hidden, especially in the context of a romantic relationship. It seems to many that if friends can still show a scar or go with a stick, then it is simply impossible to go out somewhere with a guy.
The general message in our society is this: disability and sexuality are incompatible, a person with a disability should be pitied and treated like a child, and not be attracted (and if you do, then you are a pervert). This never came from my family, no one ever said that a disease could prevent marriage, start a family – and my friends were told this openly, “you certainly won’t get married”. And I heard this about myself from my friend’s mother. At the same time, among my friends with RA, she is somewhat married, they have small children – even with more severe arthritis than mine.
My friends were told openly: “You definitely won’t get married.” And I heard this about myself from my friend’s mother
For me, in the history of self-perception, publicity is very important. It is important to make life with illness visible, not to gloss over it. And this is especially important for our country: we see very few people with disabilities on the streets – then let’s see them on the Internet and understand how they live. Understand that you should not dump all your thoughts and words on them. We shot an educational video about what you can’t tell people who take hormones – all these phrases are about cheeks, small stature and a baby face. All people with RA face this, and it is a constant pain – and in the minds of people without this disease it is a compliment, something kind and good.
I believe that people should not say anything at all to each other about an appearance that they did not choose. You can praise clothes, bows, styling, lipstick – but not something that does not depend on us. I didn’t choose whether I would have arthritis. I didn’t choose whether to take my medication – if I didn’t take it, I could die. I do not want to comment on this. “A small dog – a puppy until old age” is not a compliment. I am an adult woman with a college education, I am doing serious things, I am working on rebuilding the classical education system – I am not a puppy.