I know that many people with many various illnesses have gone through similar experiences and have similar symptoms, such as Fibromyalgia, which is another illness that I have. However, I kept this post zeroed in on Myalgic Encephalomyelitis (ME) just to keep things simple.
First, without going too much in depth on every ME symptom and they’re causes, let’s talk a bit about these blunders and what attributes to them. Keep in mind, yes, everyone sometimes looses track of what they were saying or loose balance but for someone with a illness like this, it is much more extreme and often is a 24/7 constant struggle. Not only that but it is also a invisible illness; invisible illnesses are not easily recognizable and, to others, the person suffering may look completely healthy.
One of the main symptoms of ME is brain fog, a serious symptom of ME that we rarely, if ever, get a break from. Brain fog is a broad term we use to lump together a collection of symptoms that effect brain function. Some of these being…
Slowness of thought
Difficulty reasoning things out
Difficulty finding the right word
Difficulty comprehending Information
Frequently lose train of thought, forgetting what you were going to say.
Trouble expressing thoughts
Difficulty making and/or retrieving memories (long/short-term memory deficits)
Frequently get words or numbers in the wrong order
Slow to react
Poor hand to eye coordination
Difficulty following a conversation when background noise is present
I won’t list all of the physical symptoms here but, again, here are some of them…
Loss of balance
Tremor or trembling
Trouble breathing, difficulty expanding lungs.
Heavy breathing due to lack of oxygen
Intolerance to certain foods or alcohol
Sensitivity to light, sounds, smells, and temperatures.
Sensitivity to touch
(I’m going to go ahead mention this though perhaps not a symtom it can be a result of symptoms: sudden, in-suppressible crying due to extreme exhaustion or frustration.)
Both mental and physical symptoms can cause a innumerable amount of painful and embarrassing moments.
“Would you laugh?”
Yes, everyone makes mistakes and it’s good to learn to laugh them off. I’m someone who doesn’t mind laughing at myself. I might even say that good humored self-depreciating humor is a big part of my sense of humor. Obviously you should never be OK with someone laughing at you but it’s good to be able to laugh at your own mistakes with someone. However, there’s a difference between typical human mistakes, and mistakes brought on by ME. Mistakes caused by the disabilities that ME causes. Would you laugh at someone who has a disability?
When you’re with your good friends and one friend is distracted as he enthusiastically tells a story when suddenly he trips. He’s not badly hurt, him and you all have a good laugh.
But when your friend has a serious leg injury and keeps stumbling as he tries, with all he’s got, to walk. Would you laugh at him?
No. Because you know he’s hurt, you know he can’t help it and you know the struggle he’s going through just to walk his to destination.
Then why would it be OK to laugh at someone with ME? When that person walks straight into a pole because there reaction time is delayed or their balance is bad or they got a moment of dizziness. When they’re trying to say something, fighting through a bog of brain fog, trying to keep their thoughts together, trying to remember simple facts or words, trying to say the words with out slurring and jumbling them all while trying to breath and sit up. When they mess up, would you laugh at them?
“It’s not funny.”
For eleven years I have let it slide each time. I’d laugh it off and tell myself “don’t be a stick in the mud, just laugh with them.” But more and more I’ve come to the realization that it’s not alright. It’s not that I don’t ever laugh at the mistakes I make. I often joke around about it. I can at myself and have a sense of humor about my situation; I make jokes about things pertaining to life with ME with certain people. Laughter is the best medicine, right? Those few people though are ones that understand, ones that know personally that chronic illness is not a joke. ME is not funny, it is a very serious illness that has taken much of the quality of life from many people and for some, it as taken their very life. And if I don’t take it seriously how can I expect others to?
Secondly, just like an overused joke, it’s not funny after the fifth or hundredth time you’ve heard it. I’ve heard this “joke” countless times every day. As I mentioned above, ME/FM can cause many mistakes over and over again, maybe even in just a few hours.
Thirdly, if I laughed at myself every time I lost my balance, jumbled up a sentence, or forgot how to do something simple, etc. then I would look like a crazy person. I would never stop laughing because I am constantly making mistakes.
“It takes too much energy.”
And finally, I literally don’t have the energy to laugh at myself every time I make a mistake. Much of the time I don’t have the energy or strength to smile, much less laugh. Or if I do have the energy to, I have to decide “is it worth it?” As a spoonie, we have to pick and choose carefully what we spend our spoons on because we know we have a very limited amount. If you do not know what a spoonie is or why I’m talking about spending eating utensils, I recommend you watch this video. It will explain the spoonie theory and some of what it’s like to live with a chronic illness.
So in conclusion, for the sake of my health I have decided to try stand up for myself more to stop forcing myself to laugh when ME causes me to mess up.
This was not written in anger nor in search of pity but rather just me sharing some thoughts and conclusions that I have come to over the years and to raise awareness for chronic illness warriors everywhere.
If you are friend of or know someone with a chronic illness I hope that this gave you some awareness and insight into what it’s like for someone with a chronic illness and why we may not always laugh along when we make a mistake.
Sending lots of love and spoons!
Link to the video on The Spoon Theory:
What is ME?
What is Fibromyalgia?