On learning how to live in a different body

The thought of writing this post has been with me for a while. What made me finally write it, was a comment I saw in a support group for people who suffer from an autoimmune disease called Sjogren’s Syndrome. I’m a member of this group. I joined a few months after getting diagnosed (the path to my diagnosis is a different story, that I will leave for a different post). I joined out of a feeling of isolation and fear. I now know that I’m neither alone with this disease nor with feeling isolated and scared. Some reasons for the latter I would like to lay out here in more detail.

What was in that post that suddenly motivated me to write? It was a simple statement that brought back all the feelings of sadness and anxiety that I lived through especially in the first few months of the disease:

“It never occurred to me that one day I’d wake up sick and never get better”.

Of course, I did get better, but – and this part is very hard to convey to anyone who does not suffer from a chronic illness, I believe – I am now living in a different body and this has changed my life.

For months now, I have been struggling to learn how to operate this mysteriously different little machine. Things I thought I had learned about myself in the first 30 years of my life turned out to be no longer valid. They range from rather trivial things (I clearly no longer tolerate lactose) to fundamental ones (I no longer have much tolerance for stress or infections). Now a night of bad sleep, a cold and even my monthly period can knock me out for several days by causing a flare.

The whole concept of a flare was new to me. It’s a fundamental feature of many autoimmune diseases and is characterized by a sudden increase in symptoms or symptom intensity. What exactly that means for every single person is something you get to figure out on you own. For me (at the moment) a flare typically consists of the following: My dry eyes get noticeably worse, there is a steep increase in sensory sensitivity (sounds, light and touch can be unpleasant or even painful, so I tend to avoid people) and certain joints start to hurt (my wrists, the left knee and the right hip, typically). What I hate most though, are symptoms I suspect to be neurological: sudden weakness of my muscles, especially in my legs, general fatigue and brain fog. The muscle weakness feels mentally exhausting because it means I can no longer do any movement automatically. Instead I have to carefully plan and command each step. Each step is slow and I fear that I might fall. This can be mentally so demanding that I just need to stop or I start to cry. This is the kind of thing that drives me into despair. The fatigue is similar. It’s like all the energy got sucked away. Occasionally I stall in something I was doing or even just in the middle of a thought. Everything just stops. Someone I met at a support group meeting very fittingly described this phenomenon as “the stare”. It made me smile, because I knew exactly what he meant. It’s like falling asleep without closing the eyes (often with mouth open). Brain fog could be seen like a muscle weakness and fatigue applied to thinking. As my physical movements slow down, so does my thinking. It feels like wading through clouds. To me, a person who is usually a fast thinker and speaker, this is very frustrating. I can’t find the right words, am unable to focus and lose track of my thoughts in the middle of sentences.

All of this literally changed within weeks. Before I got sick with Sjogren’s, I was pretty healthy. I think anyone going through a period of perceived rapid decline in health and general physical abilities would be scared. Especially before receiving a diagnosis, when one doesn’t know yet what is going on. But even after being diagnosed, as symptoms keep evolving (new type of rash here, a wound that doesn’t heal there) the perceived high level of unpredictability of your own body is scary.

Luckily, I don’t have all those symptoms every day. No, there are definitely good days and even good weeks. However, bad days come again, and again, and again. Going through the same thing over and over and not being able to do much other than accept your situation and trying to comfort yourself is hard. It can make you feel hopeless. And if you are not met with understanding and support you end up feeling isolated.

Maybe being trained as a scientist has helped me handle my situation. I don’t mean the flexible work hours (though they do help). Rather, being used to think as a scientist has helped me to view my situation with a rational, open mind and to explore my options. I could take a curious look at some of my symptoms. I could make careful observations, for example noting down various symptoms to identify patterns and trigger stimuli, and I could read through the scientific literature. This has helped me not only to better understand and appreciate my new body, but also to find good strategies to live with it. For example, I found a good diet that seems to help reduce symptoms. Through physical therapy I got to know which of my joints and muscles are weak and how I can move and train them to avoid damage and inflammation. Also, I am now able to spot early signs of a flare, which allows me to seek rest and potentially avoid worsening of the symptoms.

All in all, getting sick with an autoimmune disease has resulted in a year of self-experimentation and discovery. I’ve learned a lot and most days I now again look hopeful into the future. This new me even came with some surprising positive features such as an overall improved mood (paradoxical, I know!). That said, I haven’t forgotten the desperation and sadness I felt over a life I thought I would no longer have. My thoughts are with all those who (still) feel that way – they deserve an environment that meets them with love, understanding and support. We may be changed, but we are not broken.

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