I am a Myathenia Gravis patient reporting my inpatient experiences regarding misunderstandings and occasional inaction by medical staff when weakness symptoms suddenly developed with this “invisible disease.” I explore the realities of being a “FALL RISK” for those who have Myasthenia Gravis. Experiences which risked injury from falling and collapse occurred both in hospitalizations specifically for Myasthenia Gravis and for non-MG related inpatient stays.
An Invisible Disease
On good days, Myasthenia Gravis is an invisible disease. On strong days when ptosis is not out of hand and other facial and neck muscles are behaving, MG patients look like healthy individuals. We function as healthy individuals. Only a possible scar from a thymectomy serves as a visible sign that something might be amiss with our health. People even misinterpret the scar as being from a thyroid operation, rendering Myasthenia Gravis even more invisible.
Unfortunately this status of normalcy can change at a moment’s notice with little to no warning. The sudden development of weakness provides for true shock value to the average observer when our muscles cease to function on a day that has thus far been a strong one. Occasionally the MG patient might be met with disbelief that anything is actually wrong when sudden weakness sets in. Surely we’re faking! This disbelief can actually be dangerous for the myasthenic patient with this invisible disease. Although there are surely doubters in every walk of life, the group I will focus on here are medical professionals. To be even more specific, I write of misunderstandings with techs and nurses.
Fall Risk and Myasthenia Gravis
A year and a half ago I checked in to the hospital for emergency IVIG treatment. It was my first run-in with medical professionals who were more inclined to believe I was faking not being able to walk than they were inclined to actually help me with the problem. I alluded to the event briefly in my blog post “A Bit Too Close to Myasthenic Crisis.”
As appalling as it was to face plant (thankfully into a bed) as an unbelieving nurse looked on, I only wrote a word or two about it. As awful as it was there also to have techs apparently think that I was simply wanting attention (or ?????) in needing help to get to the bathroom for two entire days, I did not write about it. Surely that was just a terribly odd and unusual experience, despite the fact that during that stay I was actually hospitalized FOR Myasthenia Gravis treatment. I wrote it off as a fluke. I tried not to be overwhelmed with the grim reality that the healthcare workers caring for me did not recognize the ins and outs of the very illness that had hospitalized me.
Other minor run-ins occurred at outpatient private medical practices. Without the hospital hustle and bustle, doctors were close at hand to identify my stumbling and weakness more quickly. None of these incidents compare in severity to another in-patient experience I had earlier this month. This time I was inpatient at yet another hospital for a health issue unrelated to Myasthenia Gravis. The only indicator given that I had Myasthenia Gravis other than doctor’s notes was a yellow wrist band that said “FALL RISK.”
After several days of good mobility (with only so far to walk), I found myself slowly collapsing half-way down a hallway. At the head of the hall, I could walk fairly normally. Halfway to my destination I sensed my last successful step. Despite my yellow wristband “FALL RISK” status, I was provided no cane, but had managed until then. Now I awkwardly pressed my knees into each other to keep my legs from completely buckling. My hips and pelvic floor were painfully the only truly functional supporting muscles. A nurse standing nearby, buried in her chart, ignored my pleas for her attention.
The first time I called out, she completely ignored me. After trying once again to move, it just wasn’t happening. I began to waver, and the pain of stressed hip area muscles was smarting. Once again, I called to the nurse saying “I don’t know your name, but please help. I can’t walk.” She dismissed me, saying she was busy. I would have waved my “FALL RISK” banded wrist around, but I knew such motion would result in imbalance and crashing. At this point my voice became more urgent and I begged for her to please help me – that I was collapsing. At this point, all of the patients present were looking on in rapt attention, forbidden to interact physically.
In behavioral health institutions, patients are forbidden from having any physical contact. All of my fellow patients wanted to help, but these things can be misinterpreted by staff. It was against the rules. I was also not allowed to have my cane, due to its status as a weapon thanks to its construction with a hard resin knob atop the wooden stick. This made my invisible disease even less obvious. I never managed to get a cane or wheelchair from the hospital. Such a thing is more difficult than it should be in physical health hospitals even. In a psych hospital it’s near on impossible.
Once my tone of voice and the audience grew, I finally got a smidgeon of the nurse’s attention. She came the few steps towards me and said, “Of course you can walk! Just move your leg.” By that point I was getting very angry and was in great pain from compensating for my leg weakness, but I knew that any show of negative emotion could be interpreted as aggression. As best as I could without actually falling over, I made a tiny hip motion as a pseudo attempt at taking step (which I decidedly could not manage). By this point I was straining my pelvic floor muscles. She then said “why do you think you can’t walk?”
You must remember, I was in a MENTAL hospital. Of course, it was “all in my head.” Admittedly the nurse had not yet seen overt symptoms of my invisible disease. I replied that I have a neuro-muscular disease called Myasthenia Gravis. At this point my locked knees started giving way, and she still looked on in disbelief. Finally I broke the cardinal rule and called directly to the other patients for help. They immediately started running, having believed the situation all along, while looking on in horror at the nurse’s inaction. The “FALL RISK” wristband (even without knowledge of Myasthenia Gravis and the weakness it causes) said enough to alert them.
Once the nurse saw their willingness to help, her eyes got big. The realization had finally hit that I was actually in trouble. She was then of zero practical use in helping, not even knowing how to offer proper support for me to walk once she actually deigned to offer a hand. Psych nurses apparently aren’t as directly trained in physical maladies as much as a physical nurses are.
Two patients helped in the end, and I managed to avoid any injuries from falling, but for strained pelvic floor muscles. I managed to get to a chair in a nearby room to finally collapse fully. The nurse then asked why in the world I would try to walk if I couldn’t. I declared that Mestinon (an oral medicine for Myasthenia Gravis) would help. She then simply declared that the nurse’s station was at the other end of the hall and walked off.
Last year there was another such hospitalization (don’t get me started about Easter and triggers) at a different hospital. During that stay I also unexpectedly collapsed in weakness from Myasthenia Gravis symptoms. I received prompt help in that case from a psych nurse nearby. A few months before that I collapsed at a private doctor’s office. The confused office staff helped me fairly quickly. It just shows that it’s a roll of the dice as to what type of staff you’ll get at any hospital or even doctor’s office.
Injury from Falling
One thing I have learned from collapsing from Myasthenia Gravis is to stay calm. Generally as long as I’ve stayed put afterwards, symptoms have not worsened any further. I always make sure I have Mestinon on me (which is not permitted in hospitals). As long as I haven’t been in a hot room or outside in sunlight, I’ve been fine after collapsing. I just accept that I shouldn’t try walking for a while. Nonetheless, falls can cause injury. That is why patients with Myasthenia Gravis are tagged as FALL RISKS. Once I got a concussion once, collapsing into the seat of a car. The short walk in a hot parking lot was too much. Another time I twisted my ankle while collapsing forwards towards a place to sit.
I unfortunately don’t have a good answer as to how to prevent such misunderstandings. Misunderstandings are inevitable with this invisible disease – even when collapsing from weakness. One would just hope it wouldn’t be from medical professionals. Inform your nurses and techs of the FALL RISK when you meet them. When you’re sick in the hospital this is not always easy to do. Sadly it seems that there truly are enough patients purely seeking attention that there is often reason for healthcare workers to be skeptical. In hindsight, I wish I had just started screaming “HELP!” during the incident. In a setting that requires calm and quiet, this can be disruptive. I shouldn’t have had to resort to any of this, but in any type of hospital, medical workers often completely ignore wristbands.
Tattoos decorating scars are a bit trendy now. I sometimes dream of a tattoo with the words “Myasthenia Gravis” inked onto me in a suitably “street” font. My thymectomy scar would be the text’s baseline. Now I’m thinking getting the words “FALL RISK” might be more prudent.