What Do You Think About “Patients Can Live a Normal Life”?

What Do You Think About “Patients Can Live a Normal Life”?

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.

tv robot explain lost in space
Geez, I will! Source: www.giphy.com

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?

seinfeld idk shrug jerry seinfeld i dont know
I don’t have an answer to that right now. Source: www.giphy.com

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.


EmpatheticBadass

EmpatheticBadass is a young-at-heart writer from Ohio (Go, Bobcats & The Marching 110!)) who is passionate about being a voice for the patient perspective.

This Post Has 3 Comments

  1. I have this disease and when I was diagnosed my Doctor told me that there was no cure, without the Imuran I would continue to get worse because I was in the middle of the disease and with Imuran I could go into remission. I was told we aren’t sure what the long term affects of the meds would be so I started taking them. I’m in remission but still have flair ups from time to time, I know what can happen to me and to say I’m happy with having MG would be a lie, I hate this MG but it’s part of my life and I’m dealing with it. I’ve never been one to want things sugar coated so I’m glad my Doctor told me everything he knew about MG. I pray that one day soon they will find a cure. And for those who say Patients can live a normal life well that’s not so, we live a different kind of normal than others.

  2. It’s not normal- if normal was before. I read this as a newly diagnosed patient “in exacerbation” a year and a half ago and kept waiting for normal to come back. It made things harder to accept. I thought I wasn’t trying hard enough. I have hours that feel normal, but not really a whole day. I think this gives the wrong idea to patients their families and even medical support people. I think most people do not go on to live a normal life- I live a 50% life if I’m lucky and I don’t leave the house that much. I was a busy nurse, mother, grandmother, and outdoors person walking, splitting wood, chasing kids. Now I have to rest after cooking a light breakfast in an air conditioned house. I really hope this false statement is removed.

  3. Is it a “normal” to have your chest cut open to take your Thymus gland taken out? Is it normal to have infusions, plasma Phersis which left me with a Stroke? I was in ICU, they lost me twice. I had to learn to walk, talk speak and swallow all over again. Is it normal to have days when you have to sleep all day just so you can avoid a Crisis? Is it normal, out of no where your vision becomes double preventing you from driving or to keep your job?
    This should be corrected for those of us who know we have a serious disease that last month tried to keep me from breathing requiring hospital stay, given high doses of Steroids that have side effects. It cost me a knee and hip replacement.
    Just what do you consider serious?

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