I have Myalgic Encephalomyelitis (CFS/ME). 

This means that my mitochondria’s chemical process of producing ATP (which is what gives energy to the body) is liable to break down, sometimes at multiple places. Functionally, it means that, when I’m symptomatic, I suffer from post-exertional malaise – where even very mild physical or mental activity can cause extreme fatigue that doesn’t resolve with rest. For me, it also means that when I’m symptomatic that my muscles get inflamed, it’s difficult to walk, I have a hard time processing information, and I lose speech. 

Symptoms are triggered by lack of sleep, stress, and other illnesses. Flare ups can last for as little as 12 hours, or can turn into relapses that last years. There are treatments that work to different degrees for different people (Vitamin B12 supplements have been helpful for me); but rest is the only treatment which seems to make a difference for most people.

I’ve had CFS/ME since I was ten, with long periods of remission. 

I had a relapse that started about a year and a half go and which is ongoing. I’m also pretty sure that most of you who are reading this had no idea that this was happening.

There’s a good reason for this. It’s called “masking” or “passing”. The person with the invisible illness develops a public persona that allows them to present as able-bodied. This has benefits. It reduces social stigma. It allows them to hold down jobs that would otherwise be unavailable due to prejudice. It allows them to avoid the admiring/condescending pity that so often frames how people relate to those who are differently abled. 

Passing has a cost, sometimes a steep one. Pushing beyond our body’s boundaries can cause other health issues or turn minor flare-ups into long-term relapses. It can lock people in a vicious cycle of public performance followed by private crashes. It also means that every professional or social engagement has an element of performance. The farther the gap between one’s able-bodied performance and one’s actual health – the higher the costs and the greater the risks.

I “pass” regularly. There’s a meeting, a community event, or someone knocks at the door. On a bad day, or even an average day, I have to pause and put on my persona. My gait straightens out, I put an extra charge in my voice, I concentrate, and then I log on, or open the door, and walk in the room and come across as “Ben” – who I’m told, is passionate, enthusiastic, articulate, and positive. The curtain comes down and the crash (small or major) begins. I lay down, sometimes nearly pass out; my words come only stubbornly, my brain is a haze; and hopefully in a little while I start to feel better. 

There are times when this practice is not difficult or not necessary. (I had a three year stretch of good health not too long ago where I gut renovated an entire house, pulling 80-100 hour weeks the final three months to get us in under a tight deadline. There are people my own age who probably couldn’t have pulled that off.) I’ve even had good two to four week stretches over the last couple years where I’ve felt largely able-bodied. However, there are other times when it is grueling, painful, and self-destructive.

This last week, I had an intense flare up. I had rested for a full weekend previously. I still barely managed two days of work and one community chorus rehearsal, and then was bed bound and mute for two and a half days afterwards. I’m back to “passing” levels now, but the last year and a half have been filled with social events declined, family trips cancelled, and almost countless invisible practices to accommodate the limitations of my body. And there are no signs that any of this will simply change in the near future. 

As a family, we are not in the easiest circumstances for me to be sick. We have three young children who need our constant attention and who don’t always sleep through the night. We live in a community where we don’t have the sort of social networks who could be leaned on to provide support over the long-term when my body fails me. We live on an island, which makes travel arduous and complicated, not just because we have three kids; but because I cannot rely on being able to rest when I need to. I’ve simply stopped going to the mainland in most circumstances – because nothing ruins a trip like desperately needing to lie down, but knowing you won’t be able to for a couple more hours because of the boat schedule.

As I enter middle age, I find myself less willing to practice these performative cycles than I did when I was younger. The endless supply of better tomorrows, which are the gift of youth, are running out. I find myself asking the question, “Would I be okay if this was my life when I was sixty?”  Writing this is how I’m trying to say “no” to this question. Materially, it feels like there is very little I can do to change our current circumstances. However, I can narrow the performance gap between my private and public selves which has grown to define my life. There are not actually two me’s – there is just one. I am enthusiastic, articulate, and passionate. I also have a body with very real limitations that require very real accommodations.

I’m not sharing this because I want your sympathy or am begging for your help. I’m sharing because I’m trying to practice a different way of being human: one that does not require me to split myself in two in order to be acceptable. I’m trying to imagine what a full life looks like with an invisible illness, but without performance. We’re trying to figure out what our household needs to navigate there. And this: disclosing to you what happens behind the curtain- is the best way that I know to start.