October 12 is World Arthritis Day. Rheumatoid arthritis is a chronic autoimmune disease that makes even very young people disabled. It deforms the joints and causes tremendous pain. We asked two girls what it is like to live in a body that is treacherously destroyed every day.
Teresa is a journalist. She fell ill with rheumatoid arthritis at the age of 18 and became disabled at the age of 26. Due to her illness, she had to give up a lot, but in return, she received a new calling – to help other patients.
“Hello, my name is Teresa, I am 29 years old, and I have been suffering from rheumatoid arthritis (RA) for almost a third of my life. It is a systemic, chronic autoimmune disease that destroys your joints and sometimes internal organs. “Autoimmune” means that your own immunity begins to consider healthy cells of the body as foreign and produces antibodies to them. “Systemic” means that several systems of the body are involved in the inflammatory process at once, therefore, RA destroys not only joints but also affects kidneys, liver, heart and various other systems. “Chronic” means that it is incurable.
Now I know all this. And when I first got sick, I was 18 years old and I believed that rheumatic diseases only occur in very elderly people or professional athletes. And when the first symptoms appeared – I had pains in different joints – I did not understand what was happening to me.
I could not raise my hand for several hours, bend my knee, and one night I woke up in tears from the fact that my hip joint was wildly aching.
But I didn’t go to the doctor because I didn’t fully realize what exactly hurt. I thought I suddenly hurt myself and did not notice: I am very clumsy, and this could well happen to me. Besides, I had to go abroad soon. I flew to the sea, ran, had fun and almost forgot about my joints. But in the fall, I got just terrible pains. A person could walk past me, slightly touch my knuckles, and my hand swelled as if I were hammering my fist into a concrete wall.
And then I realized that I still need to go to the doctor. I made an appointment with a local rheumatologist. She treated my grandmother for rheumatoid arthritis too. The doctor immediately suspected I had something autoimmune.
By the way, I didn’t know that my grandmother was sick with RA. She was old, walked hard, and it seemed to me that she just had old age problems with joints.
And of course, I was completely sure that I could not have the same diseases as my grandmother. Because I am young.
But it turned out that rheumatoid arthritis happens to everyone – with 18-year-olds, 10-year-olds, with whatever-year-olds. And it is often transmitted genetically.
I was diagnosed with RA. I started therapy only in March 2011, almost a year after the first symptoms.
In rheumatology, early diagnosis is very important – if you detect the disease as early as possible and start therapy in a timely manner, you have a chance to enter remission, that is, to get rid of the symptoms for a very long time.
This is called a “window of opportunity” and is usually the first three to six months after the onset of the disease. The very initial symptoms are called “debut”. I lost a lot of time because I didn’t go to the doctor for a long time, and now I really regret it.
In general, RA cannot be cured, and if someone promises you healing once and for all, do not believe these people. But you can greatly reduce the activity of the disease with drugs that lower your immunity. Paradox: the whole world hysterically increases immunity, and people with RA must block the work of immune cells so that they do not destroy the joints.
I could not go into remission for almost seven years. The rheumatologist and I tried all the treatment regimens, but nothing helped. And all these long years I did not behave quite adequately to the situation. I sang in a jazz band and performed on stage in high heels. Immediately after the concert, the first thing I did was throw off my hated shoes and, sobbing, rubbed my legs for several minutes, so that I could get up and go somewhere. In parallel, I worked on the morning television news and got up at 4 in the morning, slept poorly, ate every other time, and eventually got generalized anxiety disorder. A severe psycho-emotional state often causes an exacerbation of RA. And the aggravation causes even more stress – and so on in a circle.
The disease greatly affected the quality of my life. Chronic pain is not the nicest thing on the planet. Arthritis also limits joint mobility. For example, my left elbow did not unbend at all for two years.
And then the toes began to deform. Because of this, I could not stand on tiptoe for three years. When you are 5 feet tall, this is a serious test.
For some time my boyfriend watched my suffering, helped to button up my jeans in the morning when my legs were very sore. And it was he who helped me understand that it is impossible to continue living like this, that you need to pull yourself together, pause work and take care of your health. As a result, I achieved a disability group and was able to receive the most recent class of therapy on a benefit – these are genetically engineered biological drugs. Thanks to them, I finally went into remission and have been happily in it for three whole years.
Now my life is almost the same as it was before. I ride a motorcycle, jump from a two-kilometer mountain with a paraglider, work, dance, swim. I also support patients like me.
I would like to say to those people who are now being diagnosed with RA: do not worry. You will not sit in a wheelchair, even if you are told so. You will definitely be able to find an effective therapy, you just need to find a good rheumatologist and read more about your disease because knowledge is power. And of course, take care of yourself and do everything to keep your life cool, despite rheumatoid arthritis.”
Adriana is a former model. She changed countries every two months, worked on fashion weeks in London, Milan and Paris, walked the catwalks and starred for gloss. Arthritis caught her at the age of 24 – and her lifestyle had to be revised.
“Hi everyone. I am Adriana, I am 27 years old. Now I am a modeling agent, and earlier I worked as a model myself.
I have been carrying my disease since 2017. One day after London Fashion Week, I woke up and realized that I could not get up. I didn’t know what was happening to me and immediately went to the hospital.
There they told me: take a couple of painkillers and everything will go away. I didn’t hear anything about rheumatic diseases then and waved my hand: OK, let’s see what happens next.
I arrived in New York, passed all the tests. As soon as the doctors saw my X-rays, they said: “This is definitely RA.”
My mother was sitting next to me, they gave us a brochure and said: “Choose a wheelchair, your daughter will not be able to walk in six months.” Mom, of course, burst into tears.
And I also brought a cool cane with rhinestones from London and flaunted with it, like Cruella De Ville from the cartoon “101 Dalmatians”. And I decided that I would go and be treated for my mother.
Rheumatoid arthritis is a disease when psychologically at some point you don’t want to live. And then you remember about your friends, family, about the fact that they are crying next to you – and you walk for them.
The hardest part was admitting that I was sick. I desperately didn’t want to accept the fact that now I can’t dance like I used to, I can’t walk in heels like I used to.
Immediately after I was first injected with my drug – low-dose chemotherapy – I flew away for fashion week. Friends twisted at their temples and said: “Adriana, you are not listening to your body.” But at first it was great: my personal driver took me to the hotel. The hotel offered a glass of prosecco in the morning, but alcohol is incompatible with drugs for RA. I had to refuse.
And so I’m filming all so beautiful in Gucci, Balenciaga, I’m standing in a cool hotel in a cool location, but then bam! – my left side of the body just refuses. Finally, I realized that it was time to slow down.
Perhaps my arthritis developed so strongly precisely because I did not spare myself at all and continued to work day and night in the midst of an exacerbation. And of course, I didn’t talk about the disease in a professional environment for a long time – only my mother’s agency knew about it.
I spoke about arthritis publicly only a year after the diagnosis. Because in the modeling world you cannot be defective, you cannot say that your legs hurt. You are always super positive, cool, support any conversation, go to all parties, you are beautiful and carry this beauty. And when you feel defective, you are afraid to admit to yourself and the people around you. Because you can always be replaced.
And I can’t say that after the coming out they supported me. There was a reaction like, “Wow, she has rheumatoid arthritis, what a nightmare.” And then no one cares. If you are sick, you are alone.
Now I am taking modern therapy – genetically engineered biological drugs, and I am in remission. This means that my disease is not active.
And in remission, it always seems that there is no illness. But during a planned hospitalization, every six months you talk to a doctor and hear: “Here it got worse, here there is even more destruction.” And you remember that you are really sick.
But when you leave the hospital, you forget again. I even stopped paying attention to the pain. Do you wake up in the morning and can’t unscrew the cap from the toothpaste? Well, don’t care. After 15 minutes, the stiffness will go away and everything will be fine. Even IVs in the hospital have become a routine. It’s like going to a manicure – just very specific.
Many things are forbidden to people with arthritis: I was deprived of active sports, for example. I loved to run, but now I can’t. But I do yoga on a regular basis. In general, I strongly spit on the disease and most often do what I want. Climbing rocks, jumping. But if my joints start to hurt, I slow down and take care of myself.
And I got some fears because of RA. The first and most important thing is that I will not have a child. It is forbidden to get pregnant on my drugs, and many doctors dissuade girls with RA from giving birth.
But even if I give birth, there is a risk that arthritis will be transmitted to the child genetically. I would not want him or her to experience the same pain as I do.
I am also afraid that I will forget how to be compassionate. I react very aggressively to complaints like: “Oh, I had a difficult day, I had a fight with a guy.” And you’re like, “Damn, dude, you walk fine. You do not have a right to complain! ” Although I know that this is not possible. Everyone has their own problems, and what is easy for one is difficult for another.
I run a telegram channel about modeling life. Parents, children, grandmothers often write to me there. They ask me to speak with their relatives who have just been diagnosed with RA. And I always talk on the phone. These are really always very personal stories. I always open up and say: you will go through this, you are not alone, everything will be fine. If possible, I propose to meet – to look at me, to see that I walk normally, move, do sports and that everything can be fine. And when they see me live, they see that it is possible to live with this disease, it inspires a desire to move on.”
© 2021 www.ketteringjointcenter.org. All rights reserved.