“It all started in 2014, when I was finishing my title project and I felt a strange pain in my hands. At first, I didn’t give much thought to it and assumed it could be tendonitis due to computer use, but when it became more constant I requested a doctor’s appointment, this time they prescribed muscle relaxers and went home.
After a short time, the pain became more persistent and spread to the arms; it started in the hands and continued in the wrists, in the elbows and finally in the shoulders. I went to the same doctor and they sent me home, but this second time with the order to do tests.
I couldn’t do them because a week later I woke up at four in the morning and the pain was so bad I couldn’t even lift my arms. So much so that I couldn’t get rid of it, much less pick up the cell phone on the bedside table to call my father who was on the other side of the house. I was immobilized and when they finally saw me, they put me in hot water, put me in a gown – impossible to put on a shirt or a bra – and we went straight to the emergency room. I was treated by the same rheumatologist who had seen me twice and there, within this framework, I was able to do the exams.
It was the first time I knew what I had was not muscle, but autoimmune.
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Many times I have tried to categorize and define this pain in words, but maybe there are no verbal terms to do so. Visually, it’s easy, because it’s an inflammation of the joints and it can be seen with the naked eye. But basically it’s a pain that comes with immobility because what’s hard is flexing and moving the joints. In my worst fits, I had to jump straight onto the mattress instead of sitting up and then lying down on the bed. It’s a pain that makes you feel like you don’t have the strength to do certain daily and completely natural movements and, perhaps for the same reason, it’s a pain that you can bear silently.
Because at that time I could see that constantly saying that something hurts makes you lose heart and for the people around you it becomes a tiring situation. Added to this is that there is not much they can do, apart from accompanying and supporting. These are rare diseases or conditions, which you learn about daily, which are difficult to explain and which cause you to feel sensations – continuously – which perhaps cannot be further elucidated. Sometimes it’s worse and you say “I’m going to bed”, but in general it’s something that accompanies you on a daily basis. My knees hurt, it hurts to sit down and raise my arms. And for the same reason, I think that more than the disease, we should talk about symptoms.
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The body of an immunocompromised person works a certain way because basically there is an overreactive immune system and then you have to find a way to turn it off with drugs, but that, on the other hand, leads to a series of side effects that are typical of a system that doesn’t react because it’s being treated that way.
All the while, what made the most sense to me was thinking that these symptoms are a manifestation or sign of something else. I think that our organisms are not closed systems in themselves, but rather bodies that live in an environment, in a context, which can be full of bacteria and organisms, in addition to being constantly changing, and so they react to this set. . It seems logical to me to think that the body does not stop at the epidermis or the skin, and that it is part of a larger and more continuous system.
It’s been almost 10 years since that first diagnosis and what I’ve seen is that from that exact moment, All of us who live with an autoimmune disease tend to think that at some point they are going to tell us what we have and how we should treat it. But in my experience, that never happens. Rather, it gives way to a perpetual process of experimentation and trial and error, and this diagnosis, which we are waiting for so definitively, never arrives. Or it arrives in a proposed action plan.
In my case, what we knew was that I had active antigens and that is what reveals that there is an immune system disorder. This combination of antigens does not correspond to any particular disease, but is very similar to that which occurs in systemic lupus erythematosus, a chronic, autoimmune disease which affects approximately 7% of the world’s population, and for which antibodies produced by the immune system to defend itself against external aggressions, they can attack healthy tissues, cells and even vital organs. This classification took a while to arrive, and with that I knew that this common idea of going to the doctor and getting an immediate solution would never be like this.
***
During this period, I changed my lifestyle, the physical activities I do and the way I dress. THE blue-jeans They were replaced by slippers and loose clothing and the first solution was corticosteroid injections directly into the vein which made the discomfort go away immediately. It was the most effective solution at the time, but it was not free from a series of side effects that today, looking back, I am grateful to try to stop.
My body has changed drastically and so have the things I can and cannot do. Besides the pain, I felt extreme fatigue, my hair fell out, my mobility changed, my skin, how I react when I hurt myself and my ability to heal. My legs are full of bruises and sores, and every once in a while I wake up with swollen joints and I can’t even get out of bed. Right now, the common bodily logic under which people without it are governed has become totally foreign to my reality. The idea that if we take care of ourselves physically we’ll be fine doesn’t apply to us and over time we start to lose it. The same goes for the cause and effect relationship which states that if you do something, your body will react in that way. Because for those of us who live with it, our bodies react completely erratically and unpredictably.
It’s a bit like living with a body that does not react as we would like, which constantly lets us down and whose manifestations are beyond our control. For the same, This search for what is good for you or not becomes more complex because the signals are totally confusing. It’s like losing common physical understanding because overnight you’re faced with such extreme situations as your ankles swell, or synovial tumors appear on your wrists, or you lose the roughness in your fingers because they are full of fluids. , and your face swells from the corticosteroids. It is a shock that we experience and accept on a daily basis.
For the past decade I have taken corticosteroids every day. I also went through a series of treatments, took different medications, followed raw vegan diets – which I later stopped as they were causing me other deficiencies – and started looking for a primary rheumatologist. One of the first ones I found was amazing because he was more ‘old school’ and looked at my knees, my fingernails, my tongue and took the time to ask me questions. She was the one who told me not to assume that I had lupus, so as not to rule out other symptoms and also not to make a hasty diagnosis.
I also went to a well-known clinic in the United States, where I volunteered for a study. Then I returned to Santiago and again changed doctors until I reached the one who accompanies me to this day. And in this relentless investigation, I tried treatments and did tests from time to time to see how my body was reacting and how I was progressing.
In the universe of these diseases there are as many as people who suffer from them, because everyone has it and lives in a different way and even traditional medicine has not been able to come to any conclusions as specific as to why this is the case. You become obsessed with the idea that an answer is going to come, or that it happens for that reason, but over the years it never happens that way. And in turn, the professionals who accompany you are constantly researching and reviewing.
Last year I started an organic treatment, which is unlike any other I’ve tried. To begin with, I have to be hospitalized every six months and stay two days in the clinic while for nine hours I am transfused with a liquid with cells designed in the laboratory. It’s a relatively new treatment but for the first time it allowed me to significantly reduce corticosteroids. Today I’m about to hit 0 milligrams and in 10 years I had never been able to get below 5, and the side effects – such as thinning skin and easy wounds – were starting to be very noticeable.
Today, I think it is very easy to rest on one’s laurels with regard to the use of corticosteroids, because they are definitely an effective and immediate solution. But they cannot be taken for life because the impact they have on organs, hair, skin and bones is excessive. I leaned on them because they allowed me to live my life – I was afraid that this condition would determine me or be a defining part of my existence – but I couldn’t go on like this. I’m not going to demonize them, and I’m leaving them now at 33, but you have to know that they are a double-edged sword.
To these reflections it is important to add that, as in everything, this is also crossed by class difference. It is a disease that affects transversally, but which is not experienced in the same way. He is commonly treated with a drug which is worth 500 pesos and which, unlike the one I am taking (which costs 17,000), has many side effects. There is also access to certain quality professionals and establishments, and this is directly linked to whether or not you have an Isapre. Because in general, in this country, it is a condition that is lived by increasing or decreasing the amount of drugs and giving life. I am blessed with access to amazing medical facilities because I can afford it.
At this intersection another must be added; Curiously, it is a disease that affects women more frequently – out of 10 patients, 9 are – and which cannot be ignored. There is a kind of archetype that corresponds to a woman with daily and constant pain. This image is transversal to our society and it is the one we are used to, but basically this type of reality reinforces this stereotype and manages to lose interest in it a little.
When a woman says “my back hurts”, no one really cares about her.
I’m not saying that this question is not addressed, but I have seen myself in the situation of trying not to represent myself or show myself under these codes. Maybe because I didn’t want to generate something in others, but that’s also a pressure. That’s why I said it’s a condition I’ve experienced mostly in silence and with a higher level of satisfaction when I finally find another woman who is also living with the same thing. This leaves room for a common, unusual language, which is very difficult to convey when you are surrounded by people who have not had the same experience.
Source: Latercera
I am David Jack and I have been working in the news industry for over 10 years. As an experienced journalist, I specialize in covering sports news with a focus on golf. My articles have been published by some of the most respected publications in the world including The New York Times and Sports Illustrated.
