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 many physical limitations: they cannot play sports, some find it difficult to walk or they cannot move at all on their own. At the same time, you can meet a person with a similar diagnosis in any area - even, it would seem, closed to those whose health opportunities are limited.
One of the most inclusive is, oddly enough, the modeling business, where ideas about the "correct" beauty are still alive today and the selection is carried out according to strict criteria. On the podium and in advertising campaigns, people with albinism, vitiligo, and various disabilities are increasingly common. We talked with the model and the author of the telegram channel Fabb Model’s life Sasha Sergeeva about her struggle with rheumatoid arthritis, work and perception of herself with a diagnosis.
Text: Anna Eliseeva
I got into modeling when I was five years old - my mother brought me to Zaitsev's school, the first modeling agency came to me at fourteen. I participated in fashion weeks and even in the Moscow show of Yohji Yamamoto. But then literally everything in the modeling world irritated me: waiting, a series of castings and rejections. Sometimes I could just not come to work - that is, pick up and skip the show.
My studies took the first place - I graduated from the Faculty of International Business and Business Administration of MGIMO. After that, she worked in the marketing department in the hotel industry and then got into IT. She played the role of a "common-law wife": she lived with a young man, did household chores - and I liked it. But then she herself decided to get out of the relationship and left for London, where she realized that the "good job and stable relationship" scheme was as if imposed and I didn't need it. There I felt like the happiest person, fell in love with the city so much that I decided to stay. The only opportunity for this was modeling, although I was 23 years old and at that age it is too late to start working as a model. I knocked on the agency, and my previous "motherboard" (parent agency. - Ed.) Contacted me.
Now the coolest thing in this area seems to me to be working on the podium. The moments when they put a hand on my back, count down "one, two, three - Sasha, go!", And I take the first step - it's such adrenaline! Best I have ever experienced. Now I already like to get together three to four hours before the show, to paint, to speak personally with the designer. I travel a lot and communicate with people - and that's cool.
Of course there are downsides. I am constantly denied because of my age and atypical appearance - in this I am just a champion. But I learned to take rejections completely calmly. When I send fifteen applications to the agencies and everyone answers “no”, or I go through twenty castings a day, to which I am not approved, there is no other way. This can be accompanied by a lack of money, an eating disorder, low self-esteem and a shattered psyche.
In July 2017, I was at London Fashion Week. I came back somehow after a party and felt very bad: without drinking a drop of alcohol, I was as if drunk. It seemed to me that I would not make it to bed, and if I fell asleep, then I simply would not wake up. Towards the morning I stopped feeling my legs - as if they were not there. Everything went numb up the back.
I wrote to a friend, and when she came for me, I could not even go down to her. Everything hurt me, it was difficult to raise my hands, I just lay there and sobbed. I don't even know what the pain can be compared to: if you close your eyes, it seemed that someone was hitting you or squeezing a towel, only instead of it - your joints.
While my friend tried to force me to get up, we laughed in parallel: "Sasha, two steps, we didn't crawl like that, everything is fine." We went down the stairs ten steps long, probably for twenty minutes - I just could not walk. On the way to the hospital, my legs were swollen and two sizes larger. The clinic told me that they could not help - I need to make an appointment for an examination, it will pass in three months. In the meantime, they prescribed me paracetamol and did not forget to warn me that I should not drink more than ten tablets a day.
After chemistry, there was therapy, in which I was taught simple movements anew. For example, it was no longer possible to open the tap with the right hand - the joints were deformed
I had to fly home, and my mother and I immediately started going to the doctors. The blood test was excellent, but the X-rays were not. I remember how the doctor told us about the diagnosis. He looked at the pictures and said bluntly: "Your daughter will become disabled in six months." He put them on the table, came to his senses and said: "Oh, no, in three months." And then he held out a catalog of wheelchairs. Mom started crying.
The doctor explained that rheumatoid arthritis is a malfunction in the immune system, when the body perceives the joints as foreign bodies, so it destroys them itself. That is, at some point my body just went crazy and decided: "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 friends, we went to a woman with the same diagnosis, who underwent a course of treatment, but in the end turned to folk remedies. She said that she was drinking a mixture of moonshine and - attention - marsh cinquefoil, and this was no joke. She made it clear why chemotherapy should not be done and how the "miracle" remedy helps her feel and walk well. I still chose chemistry.
I had to decide on the day and time to give myself injections once a week. What have I chosen? Friday evening. What was I thinking? I do not know. The next day after the injection, I take six tablets to restore balance and every day I drink pain relievers, medicines for the liver, and in case of very severe pain I can supplement them with hormonal medications. They also gave me an eerie liquid with the scent of manure, in which you can soak gauze and apply them if your joints hurt. Once drunk friends wrapped me around like a mummy and left me lying alone for an hour - it was very funny.
In addition to my "mother", 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 just lay down on the bed, I wouldn't get up again - and I didn't intend to give up. Through pain, I went to sports, although, of course, this is contraindicated for me. I can't have a drop of alcohol, otherwise the medication will be in vain, and also run, jump and walk in 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 became covered with pimples, my hand hurt a little - in general, I felt insecure. At the station I was greeted by a drunk photographer and his assistant, with whom I had an appointment to shoot the next day. One of them - less drunk - was on a motorcycle, and I decided to go with him. How it should sound: "You are driving through Milan at night, you are going to a friend's birthday, you will have a drink." My thoughts at that moment: “I want to crash right now. It would be great to enter the building and die."
When you feel these pains, you want to die. But then you are injected with some kind of pain reliever, and after fifteen minutes you think differently: "No, life is cool, everything is fine." After taking the pills that I was prescribed as part of the experimental course of treatment, suicidal thoughts began to appear that cannot be controlled, but you can at least realize that this is due to drugs.On a Milanese shoot, my left leg suddenly swelled, so I didn't fit into my shoes. The assistants thought they were wrong with the size. Then my hand refused, my legs ached. I understood that I was not giving the photographer the picture he would like to see. It was difficult for me to accept this, because usually I work well - catch the 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 they were 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 was still walking. A board came together to say, “We will keep these X-rays as an example of aggressive rheumatoid arthritis. Everything collapsed! " It turned out that in a year I had such changes that people with this diagnosis occur in ten years. I was told that if this continues, I will have to change my feet for prostheses (it will take five to ten months for rehabilitation) and arms (three to five months). And I had to fly to Paris Haute Couture 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 being kept in a cage.
Before chemotherapy, during hospitalization, I was "cleansed", that is, I was not given any painkillers. I was in a separate room with an SOS button. It's good that there were no forks or knives, because I would have driven them into myself. I pressed the button and asked to inject at least something into me, because I could no longer endure these hellish pains. After chemistry, there was therapy, in which I was taught simple movements anew. For example, it was no longer possible 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 returned back. Perfect training for the model.
Now the body decides everything for me, and the choice in the future, perhaps, will not be made by me. Maybe I'll have to give up everything I have. But now I am not ready to give up and I want to enter the last car of modeling again, only now with this stage of RA.
It's hard to imagine how hard it will be for me in the modeling world when they learn about the diagnosis. Everyone will either get hooked on it, or just throw me out: there are still many red-haired girls with unusual looks, why bother with me? I wonder how many such “defective” models are there? On the other hand, as in the case of vitiligo, transgender people, simply non-standard appearance, rheumatoid patients should be treated normally.
I know that in the future I will be doing charity work in this area, because the disease has not been fully understood and there is not a single person who would be cured of it. Chemistry, which is carried out every six months, costs forty thousand rubles, about twenty thousand rubles a month are spent on painkillers, each syringe costs fifteen hundred, and prices change. That is, those who are financed (or those who are waiting for their turn for free chemistry and hospitalization) undergo treatment and put prostheses. To give birth, for example, I will need to be on chemistry. And if I do not inject medicine for two weeks - I feel that I am healthy - I cannot walk. It's a lifelong struggle.
I am ready for the fact that I will have to put on prostheses. I hope that chemotherapy will help and the disease will stop - 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'm only afraid that the pain will be unbearable.
Wonderzine editors would like to thank Sasha Amato, journalist and author of the Golden Chihuahua telegram channel, for his help in organizing the interview.