'I, chronically ill': the first-person account of day-to-day life with an autoimmune disease

Today I came to talk about myself and how my immune system rebelled against my joints.

Oliver Thansan
Oliver Thansan
20 November 2023 Monday 03:29
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'I, chronically ill': the first-person account of day-to-day life with an autoimmune disease

Today I came to talk about myself and how my immune system rebelled against my joints. Because I am part of that 5% of the population with an autoimmune disease. Of the 100 classified, I got ankylosing spondylitis, which feels as bad as it sounds.

Who hasn't had a little hip pain, incipient sciatica? An ibuprofen, stretch, rest and move on. I remember that feeling when I was in my early twenties. And with that youth I went to live in England because of the necessary English. In the then reign of Elizabeth II, sciatica returned. But this time he wasn't leaving. It lasted for more than a month in the form of a pain so acute that it was difficult for me to get out of bed or shower. That would be my first big outbreak of something still unknown.

It wasn't until I returned to Spain when I started having medical consultations to clarify what was happening to me - in England I only managed to get many painkillers prescribed for me. With the first doctor I ended up crying and accepting under pressure an appointment to get a spinal tap. I didn't really know why and in the end I didn't get a puncture. Now I deduce that they were corticosteroids, a type of hormones used to treat pain due to their anti-inflammatory and immunosuppressive capacity.

With the second doctor came the diagnosis, which fell first as a relief and then as a stone. I already had an explanation for my terrible pain. The problem is that I suffered from a chronic pathology eating away at my joints. “If I'm bad today, tomorrow I'll be worse,” he thought. He was 24 years old, normal for the debut of diseases of this type. Now I'm 29.

Getting to the name of what's happening to you is usually not an easy story. Susana Cabañero, 49, started a decade ago with a lot of congestion, chronic sinusitis and headaches. “The ENT doctor saw that she had nasal polyps. They were growing. They treated me with antibiotics and strong doses of corticosteroids, but they didn't go away,” she explains. They have had to operate on her twice to empty her nasal cavities of these whitish formations that did not stop reproducing.

The doctor ended up diagnosing him with chronic rhinosinusitis with nasal polyposis. It is a type II inflammatory disease. It is not autoimmune, although it has pathological inflammation in common. “The most common symptom is loss of smell. There are people who live like this for a long time and do not know that they have polyposis,” says Cabañero. His pathology also began to present with severe asthma, which is in turn a type II inflammatory disease, recurrent infections in the lungs and allergy to non-steroidal anti-inflammatory drugs, to which ibuprofen belongs. The set is called the ASA triad or Widal syndrome.

I learned about his story in an informal conversation. Experiencing something in your own flesh opens up a new, previously opaque reality. Since I found out about my spondylitis, I haven't stopped meeting people with similar diseases. And each one is different, even despite a similar clinic.

Diego Sánchez, 29, also started experiencing sciatica pain, especially in the form of whiplash. I describe it as if they were playing the harp on the nerve in your leg. It hurts like hell and seizes your limb.

In his case, the doubt about whether it is ankylosing spondylitis remains: he has a family history and the positive HLA-B27 marker, a protein on the surface of white blood cells associated with several autoimmune diseases such as spondylitis and which is detected by an analysis of blood. But the diagnosis does not come together because MRIs and x-rays do not show any injuries to the joints.

“There is uncertainty with the diagnosis and with several other things, such as not knowing exactly what is good for you. Rest can be good for you, but also movement. In fact, they highly recommend moving. But when you do it it hurts and when you stand still, too. The same thing happens with treatments: they give you something, but it doesn't work or it doesn't completely take away your pain,” she says.

Not having a diagnosis as such, Sánchez does not receive biological immunosuppressants, a treatment that changes the lives of people with diseases where the immune system and inflammation turn against us.

They came to me with my second major outbreak, because that's how these types of diseases go, with waves of symptoms often for no apparent reason. Because of my experience as a science journalist, I know how to read scientific articles and I went to the rheumatologist appointment very well informed. I knew that this type of treatment controlled the disease quite well and could put it on pause, but not in all cases. This is how the doctor confirmed it to me: “If we don't try it, we won't know if it has that effect on you.” And with some fear and hope I began to prick my leg every 15 days. Since then, almost two years ago, I have not reached the level of pain I suffered in the past.

Unlike conventional immunosuppressants, which are synthetic compounds, biologics are proteins or antibodies specifically designed to interact with molecules involved in inflammation, such as cytokines. This makes them very expensive drugs since they need to be “manufactured” by cells. According to the pharmacy service at my hospital, where I go every two months to pick up the medication, a box with two injections costs about 700 euros, which I do not pay thanks to public health. Added to this are the professionals involved in my care and the medical tests. Also vaccines: immunosuppressed people are at risk when it comes to contracting certain diseases.

Mayte, who prefers not to say her last name, has chosen not to start this treatment, for the moment. She is 61 years old and has been living with lupus for two years, an autoimmune disease that can affect various organs and systems such as the skin, heart, kidneys and also joints. I mean, it hurts. The latter is a common symptom with rheumatoid arthritis, which she also suffers from. “The feeling during an outbreak is like the flu. It is a general malaise and that generates a lot of fatigue,” she explains about lupus.

Regarding biological treatments, he says that “they lower your defenses a lot and that gives me a lot of respect. […] I still don't see myself capable.” I spent the first few months quite distressed because I felt like I was being injected with cancer…

At the other pole is Pedro Vidal, 37 years old, who longed for the treatment to be prescribed. He has been suffering from psoriasis for ten years, an autoimmune pathology that creates redness and scales on the skin. And he itches, it itches a lot. “I debuted with psoriasis when I moved from Alicante to Madrid. Surely the drier climate and also the stress of going there to start my PhD had something to do with it. I started to notice some spots on my skin that wouldn't go away. At that time I didn't have many, but two months later I developed a brutal outbreak. I had 80% of my body covered,” he explains.

He has undergone cream and oral corticosteroids, conventional immunosuppressants and ultraviolet ray therapy until he was approved for biological treatment. “I never thought I could go one day without thinking about the disease. Now days go by and I don't even remember,” she says.

When I heard these words, a tear escaped my eyes: I do remember it almost daily, although normally it doesn't move me so much. It should be noted that psychological affectation is something that all the people in this article have gone through.

“My worst times on an emotional level have been related to the worst times of pain. It took away a lot of my energy and left me very depressed. And I feel that they feed off each other: you are emotionally bad, so you think about it more,” says Diego Sánchez.

In the case of Vidal, it is added that his illness is very evident. “You go to the beach or the pool and people look at you, obviously. It is a skin disease and they can relate it to something infectious and even cause disgust. It also affects a lot to see yourself in the mirror,” he explains.

Cabañero even took antidepressants. “Commit your vital projects. “I tend to dream a lot, but I have to stop doing it because with my illness there are many things I can't do.” […] “Your whole life is conditioned. It seems not, but it is an experience that people do not see and that is very difficult to explain. That's why I think patient associations are important,” he says. She is a member of the recently established Spanish Association for Patients with Nasal Polyposis (AEPONA), whose objective is to publicize the pathology and offer resources to patients.

It has helped me to meet the people who are part of this article and many others. There is an opportunity to vent and feel understood by people with similar experiences. The diagnosis is not so suffocating.

But to taste, the colors. “The doctor recommended that I look for a group of people with this same problem, some association. I don't agree with that because spending the duration of the meetings listening to complaints doesn't particularly help me," says Mayte. Each one fights as best they can the crucible of thoughts and feelings associated with the diagnosis and that usually end up giving way to resignation. After all, the pathology is indelible.

This implies maximum contact with the body. This imposes itself and reminds you that you are an organism with needs that you cannot ignore because it will complain, a lot. Self-care then comes to the foreground, with its consequent learning and frustrations.

Diego Sánchez found his temple of relief in climbing, after the physical and psychological hardship of stopping handball training when the pain “started to get worse.” He believes that the climbing wall has given him back a certain quality of life by improving his posture and flexibility.

For her part, Mayte takes great care of her diet, she doesn't drink alcohol, she doesn't take stimulants. She also tries to get plenty of sleep. “I lead a calm life, without getting out of control, and I try to avoid people who are full of problems and who dwell on them,” she says.

There are also tricks to better manage our self-challenged body. In my case, I became very averse to needles and every time I had to draw blood or get vaccinated he gave me a sweet treat in the form of a bun. Cabañero chooses to take his medication on Sunday nights so, if he gets “some low,” he knows that he will spend it sleeping.

And what role do others have in all this? Mayte asks the people around her for patience, understanding and “that, when you say 'this hurts me', they believe you.” However, others often also surprise for the better.

“The impression is that others are going to take into account what happens to you, but I think we still overestimate it. In my relationships I have not felt rejected because of psoriasis. What one thinks is worse than what actually happens,” concludes Pedro Vidal.