Iris, after seven years with ulcerative colitis and nine autoimmune diseases: "I was a healthy girl and everything got out of control."

The philosopher Jean-Luc Nancy said that "we don't have a body, but rather we are a body"; that our entire being is contained within and arises from our physical and material reality. Following this way of thinking, it's no surprise that illness permeates our existence in every aspect.

"Living sick 24/7 for six years is very complicated ," admits Iris Torrente, a 32-year-old cleaner from Albacete living in Madrid. "You don't have a single moment of respite. You need to see that something is going to change and that there is an end."

"I just wanted to know if I was going to die."

Iris suffers from ulcerative colitis, along with nine other autoimmune diseases , and is currently trying to raise awareness of them through her social media accounts (for example, on her Instagram profile @iris_cu93 ). It wasn't always like this; it all came at once: "I was a healthy twenty-five-year-old girl, and suddenly this hit me."

As she explained in an interview with 20minutos , her life changed radically during a trip to Seville just before the pandemic. "It started as a severe case of gastroenteritis , although there was something about the pain, the discomfort, that made me realize it wasn't the same."

"When I returned to Albacete, where I was living at the time, I was admitted," he continues. "It was complicated because at first they didn't really know what was wrong. They even put me in intensive care because I wasn't saturating well. Four or five days later, I was discharged with a diagnosis of hypertension, after having seen every possible specialist at the hospital."

That first admission was just the beginning of an experience that almost everyone who lives with an illness of this kind knows: the long journey through different medical professionals, sometimes with several erroneous diagnoses until reaching the correct one: "After four weeks, I began experiencing sudden, unexplained rectal bleeding . I went to the emergency room and they told me it was bleeding for no specific reason, hemorrhoids... many things."

"They told me I had cancer, and I just wanted to know if I was going to die. Afterward, they didn't even explain to me that what I had was actually chronic."

"So, after a few months of going to the emergency room every day," she says, "they finally gave me a test called fecal occult blood and they told me I had tested positive for colon cancer. At that moment, I stopped listening to everything they were saying. They sent me for an urgent colonoscopy that took no less than six months to arrive; when I woke up, all I wanted to know was if I was going to die. And then they explained to me that I didn't have colon cancer, but ulcerative colitis, but they didn't even tell me it was chronic: they just sent me some pills and a check-up after a month."

"It got completely out of control"

Naming the pathology is undoubtedly an important step, but it is far from the final one; even more so in conditions such as immune-mediated ones, which can have a highly unpredictable course.

This is how Iris recounts it, recalling that "with the first medication I improved quite a bit , as I went from having nothing to at least having something. Then they took me off half the dose or even more because of that improvement, and then it got completely out of control. And since then it's been impossible to control."

It's also important to understand that autoimmune diseases rarely occur alone , but rather tend to coincide with other pathologies of the same type. "The other nine autoimmune diseases I have kept adding up," she explains. "Psoriasis, hidradenitis suppurativa, hyperhidrosis, hypertension, spondyloarthritis, chronic migraine due to motion sickness, celiac disease... to remember them all, I have to think about the medications I take."

"Also, I'm getting a cornea transplant for recurrent ocular herpes resulting from an experimental treatment in 2023," she adds. "I was the first person in Spain to take that medication; there were no clinical trials or anything, and it left me blind: the most I'll be able to see when they put in a lens will be 30%."

"At the worst moment, I was left hanging."

In general, Iris's case is quite extreme: "If inflammation is measured by a parameter called fecal calprotectin, and a value of 100 already indicates moderate inflammation, I had 24,000." Often, such exceptional cases, which are the ones that most require frequent medical supervision, are especially difficult for professionals to address.

"With every step we took, every medication we tried, my immune system went crazy."

"At the worst point of my illness, I was left hanging because my doctor left the hospital. Then I had a doctor who tried everything, but it's true that it was very difficult to overcome that lack of control," she explains. "He tried everything: biological treatments, apheresis... my life was based on going to the hospital. I had an appointment or tests every day, every day..."

And he continues: "With every step we took, every medication we tried, my immune system went haywire and triggered an autoimmune disease, like psoriasis. Every time I went to the doctor, I wanted nothing new to happen."

"They focus on saving your colon, which is the most important thing for doctors. And there comes a time when you often don't agree with them anymore , because you give more importance to things they don't give as much importance to. For example, I have hyperhidrosis, and although it affects me a lot, they think what I have is minimal. These are things that greatly reduce your quality of life on a daily basis."

"I'm going to have a completely different life"

Even so, this young woman remains optimistic: "I'm very happy now because I've changed doctors from Albacete to Madrid, and the ones I've had are wonderful. Furthermore, the healthcare system here offers multidisciplinary care : you can go somewhere and be seen by two or three specialists, and they talk to each other. We've agreed on surgery and an irreversible ileostomy."

"People are surprised that I'm happy," he adds, "but I see it as a way of improving my quality of life . I'm very happy because this doctor saw me as much more than just a patient."

Of course, he clarifies: "My doctor in Albacete was incredible, he's my savior, but when you've been with a patient for so long, you feel like operating on them, after so much time, is like a failure. But here in Madrid, the doctor listened to me, understood perfectly, and saw that I can't try anything else. And I see it as, once I have the operation, the dog is dead, and the rabies is over."

"Now I know I'm going to have a completely different life. I'll have to get used to living differently, but in the end, I'll be limited by what I choose to be limited by."

"I want to make it seem like nothing's happening."

In this regard, Iris emphasizes the tremendous impact these diseases have on the lives of those who suffer from them. "Recently," she says, "while giving a talk at a university, I came across a piece of data from the Crohn's and Ulcerative Colitis Patients' Association (ACCU): three out of ten patients with ulcerative colitis or Crohn's completely lose their social life . And seven out of ten experience a 50% restriction on their social life."

"The important thing is your inner circle. Getting them to see it as normal. To do that, which is very difficult, you have to tell them."

"You might think these are older people," he continues, "but among these people are children as young as 10, 11, or even nine , and young people who have stayed at home their entire lives."

That's why she places such importance on raising awareness about her illness and combating the social prejudices that still persist. "I want to show that it's okay . That if you have symptoms like incontinence, you have to treat them as normal. That if you go to the bathroom 20 or 26 times, it's okay."

"The important thing is your inner circle," he says. "Getting them to see it as normal if you need to change at any given moment. To do that, which has been very difficult for me, you have to tell them."

"We are a perfect target for pseudotherapies"

In this regard, Iris emphasizes that one of the first challenges patients face is stigma. "We are unfortunate that our symptoms are considered shameful," she admits. "That also makes us a perfect target for pseudotherapies —we are the perfect target. We fall into despair, and most of these false remedies have consequences and cause you to waste money and time."

He also points out that, although the experience in the healthcare system "is generally good or very good," there are "bad healthcare workers, and we are unlucky enough to have these negative experiences that leave a lasting impression."

"For example, a doctor in Albacete told me during one of my colonoscopies that what I was experiencing was that I needed to lose weight because I was 20 or 30 kilos overweight."

Along these lines, he argues that "we must work toward something that is very fashionable right now, which is humanization. We patients need to get involved and work on acceptance, and understand our rights as patients, and healthcare providers need to listen more actively."

And she concludes: "I think we patients need to speak up more and talk about it without taboos. Often, this illness or disability isn't visible: that's why we need to explain it and normalize it."

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