Prisoner

I am a prisoner! In prison for life... no crime committed. I am not in an actual prison. But a prisoner of my own body with a disease there is still much unknown about.

Trying to get a diagnosis

There are some tests for this disease. But not all of us test positive using the current tests. In my experience, some doctors do not believe you can have myasthenia gravis unless you have tested positive, even though you may have all of the symptoms.

There is some treatment for this disease if you are lucky enough to get diagnosed. But, not everyone responds to treatment.

Anything other than the basic treatments may be refused because a person did not test positive. But even with treatment, some of us remain prisoners for life.

It can be a nightmare

Life with myasthenia gravis fluctuates so often that it gives the prisoner thoughts, such as, "this cannot be true," or "it has to be a bad dream!"

It's a never-ending nightmare at times. Never knowing when life will be hanging in the balance. It can feel like we have to rely on someone else to know what's going on with us or to be able to save our lives.

Others don't fully understand

These other people may be spouses, friends, family, or doctors. However, even if these other people are fully aware of myasthenia gravis, they still lack the understanding of what we actually go through!

Oh yes, they can read about it and observe what we are going through. They can even ask us questions. But we may or may not be able to fully explain. Unless someone actually has MG, they cannot have full working knowledge of what it is really like.

And, if you cannot talk for yourself during emergency situations, or if no one will listen, it is very scary.

A state of constant fear

We are imprisoned by the basic symptoms of myasthenia gravis. It does not matter which form someone might have. And, there is torture that goes along with being in this prison.

On the outside, we may seem to handle vision problems well. But in our minds, there are so many things going on that most of us never talk about - like the constant state of fear.

We go from worrying when it is going to happen again when it's on, to wondering when the vision will improve when it's off. I feel like my mind kind of shuts off, and everything is very confusing until my vision stabilizes.

It's also scary each time swallowing issues occur, no matter how many times they have come and gone. Special care is always needed when we swallow anything - we do not know when this form of torture is going to start.

Feeling isolated

Words cannot express what it's like to live with myasthenia gravis. Not only is there the isolation from other people, but also the isolation from ourselves.

We don't know what to expect at any given time, and because of that, who we are is ever-changing. There is always an underlying fear of what will happen next.

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