[GregD]

Its a new show every day, but the show isn’t good.

[BKK]

I would describe it as like a city with a faulty power grid. You get brown outs from time to time where your muscles don’t get enough power and function sporadically. Occasionally you get black outs where your muscles get no power and don’t function. Neither is convenient.

[Maria]

It’s a day where anything is possible. Unfortunately, most of the possibilities are not good. When will the double vision hit, how long will my legs hold me up, will I be able to swallow my dinner, why did that shower exhaust me, and so many more. These are my days. Most people don’t understand and it’s not really their fault. They can’t imagine. And some doctors don’t believe you, telling you that you shouldn’t feel so badly. More autoimmune disorders arise. MG doesn’t like to be alone, but doesn’t play fair with the others. But I keep on going. Thirty four years now. I depend on my family. I try to find humor, because laughter helps. Somehow, God gets me through these days! Without that faith, I would be lost!

[Mama]

For me, every day is different. Today, fatigue has set in. Other days I have energy and get things done I have been putting off. I have sinus issues from time to time and the sinus drainage irritates the muscles in my throat and my speech is not good and I have to be careful swallowing. I rarely ever feel like my old self. I used to have endless energy. I really do not want to take long trips. I am quite comfortable staying home. I still get out to do errands, pay bills, and go to church, so I am not isolated.

[Dev keshav]

Anyone can google Myasthenia Gravis. It will come up with all the possible symptoms. But no one can understand that there is no normal life for us. People read about our illness, and still judge by what they see. “ you look well”

No one believes in an invisible illness, just like no one believes in an invisible man.

It’s a life of being alone in a world which doesn’t see us. A world which includes doctors who don’t understand us. It’s a life of struggling within on our own. When we look sick, people can understand that we’re not well. When we’re exhausted, people wonder why we act as if we’re ill. It’s a life of uncertainty. Every day, every moment can be different.

We are like those children’s painting books. The ones where you see a blank page, and when you paint it with water, the picture is revealed. The water in our case is compassion based on understanding. What else can I say.

[Jodi]

This captures the invisible side of MG so powerfully. That feeling of being dismissed or misunderstood by doctors, by strangers, even by people close to us, is something so many in our community relate to. We unfortunately live in an ableist world that, for the US, ignores the 30% of people who live with a disability. Your analogy with the children’s painting book is beautiful. Compassion really is the key to seeing what’s hidden. -Jodi, Patient Advocate

[Barry]

I describe it as a “Ballon” disease. you are fatigued, so you rest, so your eyelids droop, that goes away and you have difficulty swallowing, you press on one area, it “bulges”to another. difficult to control. But you don’t look ill. People don’t understand. I can walk but when I have to walk a long way, my legs get wobbly, so I use a cane for stability and balance. I get real nasty looks from some. even my Therapist thinks he needs to “push”me, and takes offense when I say “enough”.

The best way to describe MG ones from my Neurologist. You start the day with a full “tank”of energy. You never want to go below a quarter tank, or you risk trouble. I keep this in mind when I want to for a walk, or get out in the sun. If I start to feel my tank going down fast, I need to stop.

Barry

[Barry]

mis type Balloon disease