“I went through all the phases of mourning, the revolt, the denial, the bargain… It took a long time until acceptance”, said Carolina Helena. She’s 29 and has lived with lupus since she was 25. Carol runs the instagram page @diariodelupus, is graduated in physical education and works as a personal trainer, “I have always been very active in this area of physical exercise and sport, I am a judoka and I have also been a ballerina my whole life. So in the beginning I was not only scared, I denied it a lot,” she said. Carol thought it was impossible for a healthy person like her to have this kind of disease.
The causes are still unknown, but it’s very likely a result from a combination of someone’s genetics and the environment. Lupus is an autoimmune disease, which means the immune system mistakenly attacks its own body. Usually, this system can tell the difference between foreign cells and their own, but, in this particularity, the immune system mistakes part of its body, like the skin, as foreign.
“Systemic lupus erythematosus (SLE) is an immunological and inflammatory disorganization. I have antibodies that do not protect me and this puts my organs at risk if I am not careful to take care of myself accurately”, said Marina de Oliveira. She is 21 and runs the instagram page @eucontraosol.
And the beginning can be hard to go through. Carol closed herself completely. Marina felt weak and sad almost to the point of giving up. And both of them had a really negative first impression about the disease. “I thought my life was on the line, but in fact, I just didn’t know about the disease. All I knew at that moment was that it has no cure,” said Marina. Carol felt the same, she thought her life was over, “because of that it was very difficult to be able to accept such a thing.”
Just like Carolina, Marina now realizes how hard it was to accept the diagnosis, “it was a very difficult phase and self-esteem was only diminishing. The worst thing is that nobody really understood how I felt, I no longer accepted myself enough to want to be well. I gave myself completely to lupus.” She had the classic symptoms of SLE, lost weight, lost her appetite, had hair loss, fatigue, had the famous spot on her face, felt tired and had joint pains.
In Carol’s case, the first symptoms were Raynaud’s Syndrome. This phenomenon can happen disassociated with lupus, but it’s also a common manifestation in autoimmune diseases. “In the cold, the tips of my fingers and toes turned white,” she told. Still, Carol thought it was normal. A few years later, she started to better understand the symptoms she had and then, from doctor to doctor, she got in touch with a rheumatologist, “I discovered that Raynaud’s Syndrome can be just a sensitivity, but may be associated with an autoimmune disease. Since then I have been treating myself. My first remedy for lupus was in 2014.”
For Marina, when she first started taking the medicines, it was a hurtful experience because it reminded her of a time she couldn’t have back. “I was a “normal” person and suddenly I found myself taking medications to try to have the “normal” life I had before,” she lets off. “Today my treatment is done with hydroxychloroquine, corticoid, methotrexate and folic acid.”
And with the Covid-19 pandemic, the hydroxychloroquine was – and still wrongly is, specially in Brazil – prescribed as a way of preventing the disease. The sale of this medicine has increased to the point of lacking on the shelves of pharmacies throughout Brazil in 2020. “I had difficulty finding hydroxychloroquine and the price of the medication is still high,” Marina said.
The isolation implemented to contain the coronavirus can also be a trigger for lupus. In Marina’s case, the reactivation was motivated by something else, but she also points out the pandemic: “There are many reports of SLE reactivation in this pandemic, anxiety is also a trigger for the disease. Like me, many other people diagnosed with lupus have had a reactivation during this time.”
Even though the isolation didn’t do any harm to Carolina’s health, she also commented about the issue surrounding the chloroquine in Brazil. “Although I don’t take it, I speak for the other girls who take it as treatment. I think it’s a lack of empathy,” she said. And to talk about that and other things surrounding their disease, Carol and Marina started an instagram account. For Carolina, the idea came from her friend Camila, who encouraged her to start and talk about her experience with lupus: “She was and is my greatest supporter, she was the one who idealized @diariodelupus. This page was a turning point in my life, it changed my way of seeing life, of facing things.”
On the other hand, Marina realized she needed to prioritize and love herself more, that’s how she had the idea for the instagram account. “The @eucontraosol is an informative and encouraging page and by this means of communication I try to comfort other women and men with the same diagnosis as me,” she explains. For Marina, lupus is learning. “It was a fresh start for me. You need to dedicate your life to yourself. I learned to appreciate myself and to be more selfish for prioritizing my well-being.” And as difficult as it may be, there is still hope: “Sometimes, we are at the mercy of the SLE, but even within our limits, we can control the disease without feeling fear or pain,” Marina says.
“Today I accept it, I have lupus, I live in peace with it, I see myself as a strong person, I’m fine, but if I start the disease activity, I may go down all the steps that I have already climbed,” Carol tells. She feels like lupus is a roller coaster.
The article above was edited by Laura Okida.
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