Living with a chronic illness requires extraordinary effort to appear ordinary

There are hidden surprises that come with chronic illness, things nobody warns you about and that certainly don’t come with a guidebook. They affect the simplest aspects of our lives, such as looking “normal” — the simple need to fit in, not be singled out, and live like everyone else.

Yet sometimes, I feel like this is a luxury for people living with a chronic disease.

I put a lot of effort into looking normal. I wake up earlier than everyone else just to gain an extra hour or two of rest later in the day. These early mornings allow me to take a nap in the afternoon so I don’t look completely exhausted by 5 p.m.

Nobody around me seems to notice this invisible arrangement, which I did even before I knew I had myasthenia gravis (MG). I still remember coming home during high school lunch breaks just to steal a 15-minute nap. While everyone thought it was just a teenage habit, it was really my body simply craving a reset.

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My professional life is the same. Arriving early before a meeting, especially a first meeting with a new client, has become almost mandatory. I need time to catch my breath and avoid looking like I’ve just come back from a hike. With my breathing difficulties, climbing 10 simple steps can make it almost impossible to greet someone comfortably. So I anticipate, arrive early, and sometimes stay somewhere discreet until I can make my entrance looking perfectly fine. It honestly makes me feel a little sad for myself.

I also struggle with spontaneous activities. Something as simple as going out for an unplanned dinner requires a full assessment of my body. How is my breathing? Is my neck hurting? How much energy do I have left in my legs? As if that weren’t enough, I also need to make sure I have nothing planned for the next day. It’s an invisible tax that nobody sees, but I pay it almost every time I want to participate in something ordinary.

MG has also made me unusually conscious of my appearance. If I go to a doctor’s appointment, I make sure not to wear makeup, and I have my neck collar with me. This is because whenever I show up looking particularly well, my symptoms seem to be taken less seriously. I guess it’s natural to associate looking healthy with being healthy.

On the other hand, if I’m meeting a new client, I wake up even earlier to conceal my dark circles, eat properly, and give my body enough time to wake up so I can look as polished and healthy as possible. In these situations, I try to look my best.

But this routine goes beyond the immediate effort of getting ready. I spend so much time and energy planning around my body and trying to keep it in its best possible condition. Cooking healthy meals, exercising when I can, booking weekly massages — things that might look like luxuries to other people have become basic needs for me to keep up with everyday life.

I also spend a considerable amount of time looking for additional opportunities just to cover my medical and self-care expenses. I don’t think many people would consider taking on extra full-time work just to afford weekly massages, but for me, they help manage the pain and make everyday life more bearable.

Sometimes, I minimize all these things that help me get through life. I even find myself feeling guilty for complaining about being tired. But when I look at the bigger picture, I realize how many invisible steps I take before doing anything, things that everyone else may do with little effort at all. Every little adjustment requires energy, planning, and sometimes sacrifice.

MG is a huge consumer of energy, and not just physically. It takes energy to manage symptoms, anticipate exhaustion, maintain appearances, organize a social life, and keep a professional life running. Sometimes, the hardest part isn’t doing the actual thing. It’s everything I have to do beforehand just to make it look effortless. And perhaps that’s one of the most exhausting parts of living with an invisible illness: making an extraordinary effort to appear ordinary.

Note: Myasthenia Gravis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Myasthenia Gravis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to myasthenia gravis.