Rebelling Bodies: Living with Autoimmune Diseases

Autoimmune Diseases and Diagnosis

Radosław Wojtas: How are you feeling?

Maria Mazurek^*: Very well. Since my rheumatoid arthritis was diagnosed and treated, I’ve been in remission. I work, travel, play sports, and lead a normal life.

You begin your book Zbuntowane ciało. Jak zrozumieć i oswoić choroby autoimmunologiczne (The Rebellious Body: How to Understand and Tame Autoimmune Diseases) with a description of a severe attack that struck you during a vacation in Bali. The pain was so intense that even a healer was called in. Do autoimmune diseases often manifest so suddenly?

Most patients with autoimmune diseases are diagnosed during a flare-up, which is an intensification of the disease. That was the case for me too. These are moments when, in such diseases, especially rheumatic ones, you rapidly lose functionality and experience tremendous pain. The deterioration happens week by week, sometimes even day by day. Earlier symptoms are usually very subtle. A year before, I had general, non-specific symptoms – I lost a bit of weight, started feeling cold, and experienced stiffness in my hands. Ideally, patients should be diagnosed at this stage, before the full-blown disease appears.

But they aren’t, either because they downplay such symptoms, or the doctor dismisses or misinterprets them. Did you see a doctor at that time?

Yes, I did. Blood tests were ordered, but they came back normal. When the rheumatologist saw them, she said she had feared I might have a “nasty disease” like rheumatoid arthritis, but wasn’t sure enough to diagnose me at the time.

What are the Autoimmune Diseases?

What are these “nasty diseases,” or autoimmune diseases?

To put it simply and vividly, autoimmune diseases are a group of conditions where the body recognizes itself as the enemy. The immune system’s activity can be directed towards specific organs, as in Hashimoto’s disease, where it attacks thyroid tissues, or in type 1 diabetes, where it attacks pancreatic cells. It can also attack not just specific tissues, but the entire body. This is the case with rheumatic diseases. We associate them with joints because they’re usually attacked first, but these are systemic diseases. The immune system is so overactive that it can attack all organs.

A large portion of the four million patients – which is the estimated number of autoimmune disease cases in Poland – wait years for a diagnosis. How long did you wait for yours?

My entire diagnostic process was completed within a few weeks. At the time, it seemed very long to me. I was suffering more and more each day. One day I had trouble putting on socks, the next I couldn’t press down on a door handle to open it. I would howl in pain at night. It was such a strange and sudden experience that those few weeks felt like an eternity. Now I know that the process of diagnosis was actually swift. Diagnosis often drags on for months or years. Some patients’ stories are truly chilling.

You recount some of these stories in your book.

One of them is the story of a girl with psoriatic arthritis. Her symptoms started when she was 19, right after high school graduation. Do you remember your post-graduation summer?

Of course. It was the longest and one of the best summers of my life.

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When the Disease Strikes

I remember mine in vivid detail. I have a special compartment for it in my memory. It’s a moment that greatly determines how a person’s life will unfold. The girl whose story I tell had plans and dreams like everyone at that age. She was enrolled in university, signed up for driving lessons, and started her first summer job. That’s when the symptoms appeared. The disease kept her homebound for two years. Her parents didn’t trust doctors, so they sent her to a homeopath. Like most “miracle workers,” he claimed he could cure her. Her boyfriend broke up with her. She shut herself in at home, ashamed of the skin changes, and stopped seeing friends. She only went out to walk the dog and get remedies prescribed by the homeopath. Her symptoms progressed until she could no longer get out of bed on her own.

Is There a Doctor in the House?

Is that when she finally gave up on the “miracle worker” and went to a doctor?

Yes, only then did she seek professional help. The doctor quickly made a diagnosis and started treatment, and the rest of her story improved from there. But her life could have been very different. She didn’t return to university, the joint damage was irreversible, and those two years left a deep mark on her psyche and self-confidence.

When you hear stories like this – and there are many – I feel grateful to my doctors and for the position I was in. Today I know it was a privileged situation. At the same time, I feel angry about how diagnosis and treatment look in Poland. The reality is that only a handful of patients with autoimmune diseases, especially rheumatic ones, receive proper care.

I’ll give you some numbers that illustrate this: you often have to wait more than a year for the first visit to a specialist clinic, while a patient needs to be diagnosed within a six-week “window of opportunity” after symptom onset to greatly increase their chance of remission. Modern treatment – biological therapies – is only available for most of these diseases through drug programs at referral centers. So it’s essentially rationed. The constitution speaks of “equal access for all citizens to health care services financed from public funds.” In my opinion, this provision is being violated. Initially, I understood it somewhat, at least from an economic standpoint. I stopped when I learned that the state spends ten times more on disability benefits for people with rheumatism than on their treatment.

Finally, one last number: there are about half a thousand rheumatology patients per rheumatologist in Poland. And this isn’t a doctor you see once every few years, but once every few weeks. They should know each patient – not just their health situation, but also their life circumstances – and feel responsible for them. Trust them. And the patient should trust the doctor.

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Patients and Doctors: Mutual Trust

Is trust in the doctor crucial?

The doctor must trust the patient, and the patient must trust the doctor. The patient needs to be confident that the doctor cares about them, and that they’re on the same team. Patients shouldn’t be afraid to ask questions. I’m certain that if I ask my doctor whether I can occasionally smoke a joint or have a glass of wine with dinner while on my medications, she won’t judge me or try to scare me, but will answer based on medical and pharmacological knowledge.

When writing the book and selecting interviewees, did you think about yourself from a few years ago? When you were waiting for a diagnosis? Did you write the book you needed back then? The one you would have recommended to your past self?

Yes, that’s the kind of book I was looking for then. And I couldn’t find it. At that stage, I had a strong need to find out what I could do for myself. Whether I could help myself, for example, by changing my diet or managing stress. And if so, how I could do it. Whether I could exercise or if I shouldn’t… I wrote this book mainly with patients in the diagnostic stage in mind. That’s why I talk to an immunologist, physiotherapist, psychologist, dietitian, and breathing coach, among others.

Autoimmune Diseases and Depression

In your conversation with the psychologist, you address the issue of depression. Your interviewee points out that people with autoimmune diseases have an increased risk of developing depression. Why is that?

The biological pathways in autoimmune processes and depression overlap. So, from a purely biological standpoint, autoimmune patients are particularly susceptible to depression. Add to that the life difficulties resulting from pain, loss of function, sometimes loneliness and frustration – when you combine these factors, it’s not surprising that for some autoimmune diseases, even the majority of patients suffer from depression. Doctors should really be referring patients – especially those in the diagnostic phase – to psychologists. In practice, they often don’t have such systemic possibilities, and often lack sufficient awareness.

How has the disease affected you? Has anything changed in your life?

As I mentioned at the beginning, thanks to good care and appropriately chosen medications, I’m in remission. So my disease isn’t a limitation for me. I don’t want this to sound like I’m glorifying the illness, but I’ve learned to be mindful of myself, to let things go, and to pay attention to signals from my body. It’s been a life lesson for me.

^* Maria Mazurek is a journalist with many years of experience. She has frequently covered scientific topics in the press. Author of popular science publications (written with Prof. Jerzy Vetulani, among others) and an educational book series for children. Since 2022, she has been working for Holistic Think Tank and collaborates with Holistic News.

Translation: Klaudia Tarasiewicz

Polish version: Zbuntowane ciało. Od trudnej diagnozy do normalnego życia