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When I Can't Hide My Chronic Fatigue Syndrome Anymore

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I remember in the late 1990s watching a film about a group of teenagers who dabble in witchcraft, with disastrous consequences. They use a form of magic called a “glamour,” which allows the witches to create an illusion, concealing the true form of something. In the film, glamours are used successfully several times to convince characters that what they are seeing is real, and to hide what is really there.

I haven’t watched the film for around 20 years, and yet the idea of a “glamour” came back to me this weekend as I unwittingly disguised my newly-diagnosed myalgic encephalomyelitis (ME) from my brother-in-law and his family who came to stay for an early Halloween celebration.

They are aware of my diagnosis — we even discussed it a little during the weekend — and they are aware of some of the symptoms I have had since the start of the year. Yet it occurred to me as we all eventually retired to bed at midnight(!) on Saturday that perhaps my actions and appearance during the evening had hidden the true extent of my condition.

What they saw…

Relatively decent appearance (I’m no miracle worker!): freshly washed and curled hair, full makeup, smart/casual outfit.

Able to prepare a two-course meal for eight people with various options and sides.

Halloween activities planned for the children including making pumpkin lanterns and completing a treasure hunt.

Clean and tidy house.

Drinking several glasses of red wine.

Serving a selection of nibbles later in the evening.

Staying up until midnight, chatting and laughing.

What they didn’t see…

The afternoon nap I had on Saturday to prepare me for a late night, which I woke from still feeling incredibly tired.

The fact that my lovely husband man bought all the food, including the treats for the Halloween activities because I can’t walk around the supermarket without being completely wiped out and haven’t been able to push a shopping trolley since December 2015.

The fact that my lovely husband man also cleaned the entire house because lifting of any kind (even to stack or empty the dishwasher) causes terrible chest pains and breathlessness.

The meal and nibbles were all essentially shop-bought, because — as much as I love cooking — I simply haven’t got the energy to do it any more (unless I can guarantee a lie-down immediately after eating).

The crushing chest pains I had when I finally got into bed at midnight, which woke me up throughout the night and had spread around my entire rib cage by the time morning came.

I’m not sure how I feel about this potential “glamour.” It certainly wasn’t a conscious choice
and, if anything, it’s made me realize that I need to be just as careful about pacing myself when other people are around as I am when it’s just me and the family. On the one hand, it was lovely to just be myself and not have to think about ME; on the other hand, I wondered if perhaps they might go away with an inaccurate picture of the impact ME has.

In reality, I didn’t have to reflect on it for too long: I was so exhausted the following day that I couldn’t help the girls carve their lanterns, had no choice but to use a wheelchair when we went on the spooky woodland walk at a nearby stately home and all but fell asleep on the living room floor when we arrived back in the afternoon. And so, despite the initial “glamour,” the delights of post-exertional malaise ensured that our visitors left with a very real understanding of the severity of chronic illness and the impact it can have, even if it’s not instantly visible. Now you see ME, now you don’t…

I’d love to know how chronic illness has changed the way you present yourself. Are you more open about your illness with some people than with others? Are there times when you successfully conceal what is really there? How does this make you feel?

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Originally published: October 25, 2016
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