“You Don’t Look Ill”

“You don’t look ill”

The Painful Truth Of Living With An Invisible Illness

Photo by Sydney Sims on Unsplash

I see the looks people give me. The comments they make. “You don’t look ill” they say, when I give yet another excuse as to why I can’t go and do the thing. I feel the comments just as easily as if they had slapped me on the face. They can’t understand how someone of my age, that looks like me can have a chronic condition that prevents me from doing things.

You see, my illnesses don’t mean that I need a wheelchair. They don’t mean that I walk with a limp, or walk in a way that makes it totally obvious that I have an issue. I have *gasp* an invisible illness.

Temporomandibular Joint Disorder. Facial Arthromyalgia. Yup! It’s a mouthful. Quite literally, actually. Basically, my jaw joint is messed up. Not broken… I’ve been told that would be a lot easier to fix.

There are no truly accurate statistics for how many people this illness effects. The only statistic I could find that was fully backed up is that it is most common in women of childbearing age. Yes, ladies, another thing we have to worry about.

My jaw has done this odd clicking thing since I was very young. It was always worse when I was chewing food. The dentist talked about actually breaking my jaw and re-setting it (kinda extreme if you ask me), but then decided against it.

I’ve had flare ups, and quiet patches, until I was in my mid-twenties, when my jaw suddenly locked up completely. I couldn’t move it at all. I had severely limited opening, and could barely get a couple of painkillers inside me. After an agonising couple of hours, and a trip to the emergency dentist, it finally released.

That was the start of the illness I now deal with today. I was referred to a specialist, who diagnosed ‘Chronic Arthromyalgia’, gave me some leaflets to read, and bade me goodbye with a cheery wave and a smile far wider than my locked jaw could muster.

I went home. I read the literature. I researched online. TMJD comes in varying degrees of severity; and showing a number of different symptoms. Mine include:

  • Migraines
  • Earache
  • Dizziness
  • Neck and Shoulder Pain
  • Back Pain
  • Severely Limited Opening
  • Clicking and Cracking of the joint
  • Mouth ulcers

It’s really not fun, by any stretch of the imagination.

“What about treatments?” I hear you say. Yup. There are treatments. Operations. Mouth Guards (I have one of these). The problem is that a lot of the issues with my jaw are caused by my clenching the muscles and grinding my teeth at night.

This is a result of a dark shadow commonly known as depression and anxiety. It’s not something I generally talk about. I don’t like the “You don’t look ill” looks, but I dislike the “Poor you” looks more. The problem is that when my mental health is worse, my jaw problems are exacerbated. Unfortunately, it’s a vicious cycle that doesn’t have an end.

All I can do is try to make the best of a bad situation. This is what I do every day. Some days are better than others (but that’s a story for another day). Some days, you wouldn’t have a clue that I’m any different from you, but on other days, I might need to take to the sofa and stay quiet and crochet, because that’s what living with chronic pain does to me.

I guess what I’m trying to say is, that living with any health issue is very hard, and people struggle enough without others making them feel like they are wasting time and attention seeking. There are so many invisible illnesses nowadays. We have no way of telling who is struggling with something, so please, before you make one of those rash comments, just pause for a few moments.

We are all fighting battles that others may know nothing about.

Please don’t judge a person by a label.

Please don’t judge a book by it’s cover.


Li Carter is a writer, artist and crafter. She lives in South Wales, UK, with her family, and five rescue dogs. She’s on Twitter @rbcreativeli , Facebook: Rainbow Butterfly Creative, and Instagram @rainbowbutterflycreative and is the author of My Only True Friend: The Beginning. She is currently working on a new series titled The QuickSilver Chronicles. She is the original Rainbow Butterfly, and wants to fill an ever darkening world with a little bit of beauty and creativity.

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