"Now the body decides for me": Model on the fight against rheumatoid arthritis
Rheumatoid arthritis affects about 1% of the world's population., it is diagnosed annually in one person in a hundred. RA can manifest itself both in children from a very early age and in adults - it is an autoimmune disease, the causes of which have not yet been studied. People with this disease have a lot of physical limitations: they can’t play sports, some have difficulty walking or cannot move at all on their own. At the same time, it is possible to meet a person with a similar diagnosis in any sphere - even seemingly closed to those whose health opportunities are limited.
Oddly enough, the modeling business is becoming one of the most inclusive, where ideas about the “right” beauty are still alive today and selection is carried out according to strict criteria. On the podium and in advertising campaigns, more and more people with albinism, vitiligo, and disability of different groups. We talked with the model and author of the Fabb Model's life telegram channel Sasha Sergeeva about her struggle with rheumatoid arthritis, her work and self-perception with a diagnosis.
Text: Anna Eliseeva
Modeling
I got into modeling when I was five years old — my mother brought me to Zaitsev's school, the very first model agency came to me at fourteen. I participated in fashion weeks and even in the Moscow show Yohji Yamamoto. But then in the model world I was literally annoyed by everything: waiting, a series of castings and refusals. Sometimes I could simply not come to work - that is, to take and skip the show.
I got the first place in my studies - I graduated from the department of international business and business administration at MGIMO. After that, she worked in the marketing department in the hotel industry and then got into IT. She played the role of a “civil wife”: she lived with a young man, did household chores - and I liked it. But then she decided to quit the relationship herself and went to London, where she realized that the scheme “good work and stable relations” was as if imposed and I do not need it. There I felt like the happiest person, I fell in love with the city so much that I decided to stay. The only possibility for this was modeling, although I was 23 years old and at that age it was too late to start working as a model. I knocked at the agency, and my previous “motherboard” (the parent agency. - Note ed.).
Now the work on the podium seems to be the coolest in this area. The moments when I put my hand on my back, count down "one, two, three - Sasha, go!", And I take the first step - this is such an adrenaline! The best I've ever experienced. Now I already like to get together three or four hours before the show, to make up my face, and personally speak with the designer. I travel a lot and communicate with people - and that's great.
Of course, there are downsides. I am constantly denied due to my age and atypical appearance - in this I am just a champion. But I learned to accept failures completely calmly. When I send to agencies on fifteen applications and everyone answers “no”, or I pass twenty castings a day, for which I am not told, there is no other way. It can be accompanied by lack of money, eating disorder, fallen self-esteem and shaky psyche.
Diagnosis
In July 2017, I was at London Fashion Week. I came back somehow after the party and felt very bad: without drinking a single drop of alcohol, I was as if drunk. It seemed to me that I would not get to bed, and if I fall asleep, I simply won’t wake up. Towards morning I stopped feeling my legs — they seemed not to exist. Everything was numb up your back.
I wrote to my friend, and when she came for me, I could not even go down to her. I was in pain, it was difficult to raise my arms, I just lay there and sobbed. I don’t even know how to compare pains: if you close your eyes, it seemed that someone was hitting you or squeezing a towel, only your joints were instead.
While a friend was trying to get me to get up, we simultaneously laughed: "Sasha, two steps, we weren't crawling like that, everything is fine." We descended ten steps down the stairs, perhaps twenty minutes - I simply could not walk. Already on the way to the hospital, my legs swelled up and became two sizes larger. In the clinic, they told me that they could not help; I had to sign up for an inspection, it would pass in three months. In the meantime, I was prescribed paracetamol and did not forget to warn you that you should not drink more than ten tablets a day.
After chemistry, there was therapy, in which I was taught simple movements again. For example, it was impossible to open the tap with the right hand - the joints were deformed
I had to fly home, and my mother and I immediately began to go to the doctors. The blood test was excellent, but there was no X-ray. I remember how the doctor told us about the diagnosis. He looked at the pictures and said bluntly: "Your daughter will be disabled after six months." He put them on the table, came to his senses, and said: "Oh, no, after three months." And then he handed a catalog of wheelchairs. Mom started to cry.
The doctor explained that rheumatoid arthritis is a failure in the immune system when the body perceives the joints as foreign bodies, therefore it destroys them. That is, at some point, my body just went nuts and decided: "But let's turn our bones into sand!" The only treatment option is chemistry. We were ready to consider everything — homeopathy, Chinese shamanism — before deciding what to do. So through acquaintances, we went out to a woman with the same diagnosis, who had undergone a course of treatment, but eventually turned to folk remedies. She told me that she was drinking a mixture of moonshine and - attention - a marsh Cinquefoil, and this is not a joke. She made it clear why she shouldn’t do chemotherapy and how a “miraculous” remedy helps her feel and walk well. I still chose chemistry.
I needed to decide on the day and time in order to give myself injections once a week. What did I choose? Friday evening. What was I thinking about? I do not know. The next day after the injection I drink six pills to restore balance, and every day I drink painkillers, liver preparations, and with very strong pains I can supplement them with hormonal drugs. I was also given a terrible liquid with the scent of manure, in which you can soak gauze and apply it if your joints ache. Once drunken friends wrapped me around like a mummy, and left me lying alone for a whole hour - it was very funny.
"Marriage"
Besides my motherboard, I decided not to tell anyone else about the diagnosis: I was scared that they would treat me like a marriage. I understood that if I simply lay on the bed, I would not get up anymore - but I did not intend to give up. Through pain, I went to the sport, although, of course, it is contraindicated to me. I cannot drink a single drop of alcohol, otherwise the medication will be in vain, and I can also run, jump and walk on my heels (I remind you that I work as a model). I could not admit to myself that something was wrong with me.
Once I flew to work in Milan. Then, after the injections, my forehead was covered with acne, my hand was a little sore - well, I felt insecure. At the station, I was met by a drunken photographer and his assistant, with whom I was scheduled to shoot the next day. One of them - less drunk - was on a motorcycle, and I decided to go with him. As it should sound: "You are driving around Milan at night, going to a friend's birthday party, you will drink." My thoughts at that moment: “I want to break up right now. It would be cool to drive into the building and die.”
When you feel these pains, you want to die. But then you get some kind of painkiller, and in fifteen minutes you think something else: “No, life is cool, everything is normal.” After taking the pills that I was discharged as part of an experimental course of treatment, suicidal thoughts began to appear that could not be controlled, but one could at least realize that it was because of the drugs. On the Milan photography, my left leg suddenly swelled up, so I didn’t fit into my shoes. The assistants thought they were wrong with the size. Then the hand refused, the legs ached. I understood that I did not give the photographer the picture that he would like to see. It was difficult for me to accept it, because usually I work well - I catch a wave.
It was a dream - to walk in beautiful Elie Saab dresses, to become a part of art. But at that moment they took her away from me - as if kept in a cage
A year after the diagnosis, I went for an examination, during which they decided to hospitalize me: the doctors were surprised that I still went. A board was convened where they said: "We will leave these X-rays as an example of aggressive rheumatoid arthritis. Everything has collapsed!" It turned out that during the year I had such changes that people with this diagnosis occur for ten years. I was told that if it goes on like this, I will have to change my feet for prosthetic devices (this will take five to ten months for rehabilitation) and hands (three to five months). And I had to fly to Paris Fashion Week. It was a dream - to walk in beautiful Elie Saab dresses, to become a part of art. But at that moment they took her away from me - as if they were kept in a cage.
Before the chemistry during the hospitalization I was “cleansed”, that is, they did not give any painkillers. I was in a private room, where there was an SOS button. It's good that there were no forks or knives, because I would have thrust them into myself. I pressed the button and asked me to inject anything at all, because I could no longer tolerate these hellish pains. After chemistry, there was therapy, in which I was taught simple movements again. For example, it was impossible to open the tap with the right hand - the joints were deformed. They also gave a loaf of white bread, which had to be cut whole and brought back. Perfect training for the model.
Future
Now the body decides everything for me, and the choice in the future may not be me. May have to give up everything that I have. But now I am not ready to surrender and I want to enter the last car of modeling again, only now with this stage of RA.
It is difficult to imagine how hard it will be for me in the model world when they learn about the diagnosis there. Everyone will either catch on to it, or just throw me out: there are still many red-haired girls with an unusual appearance, why bother with me? I wonder how many such "defective" models are in principle? On the other hand, as in the case of vitiligo, transgender, just a non-standard appearance, rheumatoid should be treated normally.
I know that in the future I will be engaged in charity work in this area, because the disease has not been fully studied and there is not a single person who can recover from it. Chemistry, which is held every six months, costs forty thousand rubles, about twenty thousand a month for painkillers are spent per month, each syringe is one and a half thousand, and prices change. That is, those who are allowed finances (or those who wait for their turn for free chemistry and hospitalization) undergo treatment and prostheses. To give birth, for example, I will need to be on chemistry. And if I do not prick the medication for two weeks - I feel that I am healthy - I cannot walk. This is a life-long struggle.
I am ready for the fact that I have to put dentures. I hope that chemotherapy will help and the disease stops - the pain will remain, but the body will at least stop destroying the joints. I try to love everything that happens in my life. I am only afraid that the pain will be unbearable.
The editors of Wonderzine thank journalist and author of Golden Chihuahua telegram channel Sasha Amato for their help in arranging the interview.
