May 2021 by Judith Allen Shone
“Everyone you meet is fighting a battle you know nothing about. Be kind. Always.”Brad Meltzer
When those around us do not understand our situation, their curious responses reflect through their words and actions. There is no limitations on who might not understand…doctors, family members, friends, or strangers… anyone who is unfamiliar with the characteristics of the disease myasthenia gravis.
My experience has revealed that, when in a group of people who do not understand my disease, some will have unusual reactions and their comments will reflect misconceptions. Sometimes those misinterpretations are thoughtlessly perpetuated by those who overhear.
Become aware and share what you learn.
I hope it might help if I share below some curious responses I have experienced, hoping to make it worth remembering when we’re in similar situations. Always reach out to your primary care provider with questions and inform them of any changes in symptoms.
1 – Sigma
Over the last sixty-five years I have spoken to others about Myasthenia Gravis, read newsletters and articles on MG. I’ve heard medical professionals, as well as random people, comment about the disease. Sometimes I’ve heard hurtful words and felt the glare of shame, confirming to me that we still are dealing with stigma and confusion, about myasthenia gravis. This is a good place to begin to learn.
Misunderstandings need to be corrected and not spread.
2 – Exhaustion
Sometimes I am just too tired to move, so exhausted I need help to function, or need to rest more often between activities. I was crushed inside when I overheard others call me “lazy.” But those of us with myasthenia gravis are not lazy. We just cannot move like other people, or be as active for as long as others, because the disease is compromising our muscles and nervous system. Recognize that exhaustion is a common response among those with MG.
Please, don’t call those with MG lazy. Instead, learn how you can help.
3 – Appearance
Some with myasthenia have characteristic symptoms such as drooping mouth or eyelids, slurred speech or weakness in muscles. But not all with myasthenia gravis have an appearance that reveals anything unusual. I have heard others whisper and ask ‘what is the big deal?’ when they first notice I cannot do some little task, take some little step, walk a short space, or when I cannot run. In the same way we cannot see a deep bruise or stomach ulcer, we cannot see the weakness of muscles that is happening inside our body.
Refrain from judging people because we cannot see inner evidence of their illness.
4 – Imagination
Myasthenia gravis cannot be seen like a broken ankle. It is called an invisible disease, but it is very real. I am not making up or imagining stories when I reveal about the trouble I have walking, running, reading or lifting. Those inabilities represent a very real physical process going on inside my body.
Avoid believing MG is just a ‘figment of the imagination.‘
5 – Faking it
It is known that many with myasthenia gravis can be active to a degree but need rest and then can be active again. The period of ‘activity and then rest’ is different for each person. This characteristic of MG has made me appear nearly disabled for a period of time, but then a bit later I seem normal, resembling one faking my condition. This inconsistency confuses the normal person. But it is typical for this disease to present as abnormal rather than routine.
Learn about myasthenia gravis to be aware of what is happening.
6 – Need exercise
For me, myasthenia gravis seemed painful as well as awkward when I could not walk, when my leg muscles weren’t getting the message to ‘walk.’ That was an outward sign something was wrong with me.
Aside from being terribly embarrassing, many times I’d hear, “If you would exercise more, you’d be fine.” This is not entirely true. I could exercise for days but still have the same inabilities, the same neuromuscular breakdown. Eventually, I realized the speakers generally had no idea what MG was and how it impacted any activities I tried to do.
Understand that those with MG are doing the best they can at the moment.
7 – Negativity
When I am not feeling my best, when I have a flareup, when my muscles seem weaker than normal, I usually refrain from participating in activities with others. That might seem negative or anti-social to those who do not know me well. But it is a protective mechanism I use to allow myself time to rest rather than putting my inabilities out in front of everyone for judgment.
Accept and believe when someone signals they know their body best.
8 – Confusions
We ask doctors to diagnose our weakness, our fatigue, our double vision or slurred speech. I notice confused responses today are similar to the initial responses I received sixty-five years ago. I’ve learned we must have our information concise and ready so the time we spend with a doctor is productive.
I call them confusions, conclusions such as I heard in the six years I was looking for answers: “growing pains” or “swollen knees” or “we all get tired” or “just wants attention” or “all in her head” or “I’m the doctor here”— are not helpful. There are many resources to exhaust before these are the choices. These are not what a patient, who has lived months/years in pain waiting for a an appointment, deserves to hear without investigation.
I mention that drooping eyes or blurred/double vision are not always the first sign of MG and lack of them is not an indicator. What is normal is not normal for everyone—Just tell your story.
MG is considered ‘rare.’ There are doctors who have not seen (m)any patients with the type weakness or fatigue we speak of, felt the pain we know is real, lived the embarrassment we experience, so it makes sense their course of action is to reference their college studies—ask them to take time to listen to your story.
Let’s give doctors as much information about our feelings, our observations, our thoughts related to what is going on, as complete a report on our condition related to weakness as we can, so we can help them help us with a serious diagnosis process.
Recognize that doctors need as much information as possible to complete an investigation of our symptoms. They depend on our related input.
9 – Help them feel less alone
I imagine others with myasthenia gravis can add to these stories. The best thing we can do for those who have a disease we do not understand is to ask them how we can help rather than thinking we know how to make them better. Those with MG feel better knowing someone understands.
Show sensitivity and ask how to help someone with MG.
10 – Take time to learn
When we hear something that we are not sure about, that we are curious about, related to myasthenia gravis, we can look it up to confirm what is fact and what is myth.
Help unmask myths and confirm facts about myasthenia gravis.
Read also Confusions I Experienced for more curious misunderstandings that sometimes get perpetuated from lack of knowledge.
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Ten curious responses to MG © 2021 Judith Allen Shone