The Snowflake Disease

The “Snowflake Disease”. That’s what many people call Myasthenia Gravis. Just like a snowflake, the symptoms can appear one minute and be gone the next. If conditions are right, a snowflake will hang around for a while; perhaps minutes, or hours, or days, but eventually it melts away. Sometimes a person’s experiences with Myasthenia Gravis are like snowflakes. Symptoms can come and go at random. Sometimes the symptoms stick around for a few minutes, or a few hours, or a few days. They may vary in intensity, or they just might disappear altogether…. temporarily.

Have you ever heard a strange noise in your car and took it to the mechanic to find out what was wrong, only to have the noise disappear before you got there? That’s what MG is like. You may be experiencing symptoms at home and make an appointment with your doctor, but by the time you get there, the symptoms are gone. Don’t worry, just like the noise in your car, they’ll be back sooner or later. That’s why having a good doctor is so important. They’ll listen to you, believe in you and provide you with the best care possible. Unlike the mechanic who will make you feel like it’s all in your head, your doctor will get to the bottom of the problem and start the proper treatment.

Disappearing symptoms can be both a relief and a frustration. It’s a relief when the symptoms let up and allow you to return to normal life. At the same time, disappearing symptoms can also be frustrating, even embarrassing. It’s quite difficult for people to understand how you can display symptoms one moment and appear absolutely fine the next. In fact, it may appear to them that the symptoms you were displaying may be all in your head. I swear there was a snowflake there a minute ago.

Let me reassure you, if you have Myasthenia Gravis, the symptoms are real. Enjoy the moments when your snowflakes disappear and don’t give a second thought to anyone who doubts if your symptoms ever really existed. It doesn’t matter what they think; it matters what you know.

Do you know what doesn’t melt? The emotional toll MG takes on its victims. That never goes away. Those of us with MG have felt how people look at us when we suddenly start slurring our words. We’ve watched people stare at us as we drag our feet. We’ve witnessed how one eyebrow suddenly goes up as they are surprised how quickly a symptom appears out of nowhere. We fear being judged by others as a fake, a liar, or a freak. We’re not faking. It’s all real. And while we can’t control what people think, we can control how we react. It may not be easy to do, but let them think what they want. We know it’s real.

Emotions also come into play from fear. On the outside we may appear tough as nails, but on the inside, each of us fears not knowing what’s ahead of us. We fear ending up in a wheelchair or needing to have people help us. We’re afraid that one day we will no longer be able to do the things we most enjoy doing. Most of all, we fear letting people down. Where we’ve always been there for them, one day me may need them to be there for us.

Myasthenia Gravis is the Snowflake Disease, but while the visible symptoms often melt away, the invisible fears remain inside of us.

We don’t have to fight those physical or emotional demons alone. The Myasthenia Gravis Foundation of America is a great resource for those diagnosed with MG and their caregivers. Whether you want to learn about the latest in research or treatments or just want to hear about how others are coping with MG, www.myasthenia.org is full of information and knowledge. I strongly encourage you to check it out.

I also encourage you to continue joining me on my journey and reading my blogs. I don’t pretend to have all the answers, I just share what it’s like for me to live with MG. A wise man once told me “Sharing is Caring” and that’s exactly what I try to do in my blogs. Together we can stay #MGStrong!