The first paragraph of the myasthenia gravis (MG) “Fact Sheet,” created by the United State’s National Institute of Health (NIH) National Institute of Neurological Disorders and Stroke (NINDS) and posted on their website, states:
“With current therapies, however, most cases of myasthenia gravis are not as ‘grave’ as the name implies.”
Recently, I read a blog post that took issue with the MG Fact Sheet (you can it read here), saying that those types of “Fact Sheets” can make life more difficult for people actually living with the disease.
Now, I understand why patient-education materials try to position a disease with as positive a slant as possible: they’re trying not to scare a newly diagnosed person (or their loved one).
But as the blogger, Kerry R. Bunn, Sr., points out, there are hazards with this approach….
- It can be held against you. Have any of you had a friend or family member accused you of being too dramatic about your disease (or just plain lazy!), because they read that if a person with MG is on treatment they can live a normal life? Don’t you hate that moment when they say, “On the internet it says….”? Words on a screen or in a book can’t duplicate how debilitating fatigue can be, or how your muscle weakness affects you emotionally and physically.
- MG is a rare disease, and emergency room doctors and nurses may not see enough cases of MG to really understand it. I would hope that the resources they use to get quickly up to speed don’t minimize or sugar coat, but what if they do? How can a person suffering with MG get appropriate medical care?
- People may forget that MG is still a serious illness.
- People who don’t have a chronic illness may not fully grasp that “normal” is a relative term. They may not think about the fact that their “normal” doesn’t include lifelong doses of powerful medications—and the need to plan your life around those meds (when you have to take them, what you can and can’t do whilst you’re on them, and the side effects they cause that you have to manage). Before MG, you didn’t have to get your blood filtered through a machine during a myasthenia crisis. You didn’t freak out when the kid next to you in the elevator had the sniffles—because your immune system wasn’t being actively suppressed. You were able to take moving, chewing, breathing for granted.
- The blog author points out that people still die from MG—people he knows!
But here’s my conundrum: is it even possible to accurately portray a chronic illness that can vary in severity from mild to life-threatening?
None of us want our first investigation of the disease we’ve been diagnosed with to scare the wits out of us.
Right now, the only thing I can think of to do is keep educating people who try to use “fact” sheets against us and leave the really bad news for doctors to deliver.
Has anyone ever held fact sheet-type information against you? What do YOU think needs to happen? Leave a comment and let’s talk about it!