There are not many perks to living with myasthenia gravis, especially since it can be difficult for others to understand the fatigability and variation in our symptoms. However, there are also not many things that do not benefit from a having a good sense of humor.
The symptoms of MG and the associated medications and their side effects can often become rather overwhelming. This is especially problematic when you do not know if your current discomfort stems from a disease symptom or a new side effect from one of your many medications. Side effects can range from something mild like headaches or stomach cramps to something more life-altering like neuropathic pain, hair loss, or anaphylactic shock. The reality for those suffering from a rare disease is that the treatment options are limited. This means trying to live with the side effects are sometimes better than the alternative, which could be no treatment at all.
That is not exactly a comforting thought. Honestly, most of life with a rare disease is not a comforting thought. We are often so busy fighting our battle for survival or a decent quality of life with illness, that we forget to laugh a little. We forget to live a joyous life too — which we certainly deserve to do. Especially since we are more aware of the vulnerability of life than most of our peers.
Finding humor in your battle can be done in any way you feel comfortable. A good friend of mine decided she was going to name her symptoms “Susan,” and inform all of those around her of her current state of health by describing how “Susan” was feeling that day. I am fairly certain most of us can relate our unexpectedly flaring symptoms to the statement, “Susan is being such a bummer today.” My friend found a way to make relaying the state of her health a little more fun and a little less clinical.
Although I wish I could claim that idea as my own, I have my own less creative way of using humor to cope with life and my disease. Instead of being embarrassed when I lose my balance, or my foot drops and I stumble, I like to make jokes about wishing I was falling due to being intoxicated. In doing this, I make those around me aware that this happens because of my disease and not merely public intoxication. I acknowledge the presence of my fall, but I get more control in determining how they will react to this physical representation of my disease.
By embracing humor, I am more confident in explaining my disease. By embracing humor, people usually feel more at ease while dealing with challenging situations — like having a friend with a muscle disease fall in a public place. Humor tends to make things less intimidating to talk about, and casual conversation is a good way to start educating those around you about the reality of the struggles you face.
In my opinion, the key to happiness is to never stop laughing. Laugh at yourself, make a joke, or name your symptoms something ridiculous. Do whatever you can to find the humor in your battle. You are a warrior. Never stop fighting. Life is beautiful.
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.