As a child, i knew that invisible meant “to be unseen”. A few days ago, as i pondered on this word along with the interaction I have had with a few fellow MGers, I realised that Myasthenia gravis fits this description. Hence, it is known as the invisible disease.
Its unique, or not unique presentation as the case may be, makes it difficult for a diagnosis to be made. Most of its symptoms, when they present individually mimick other more common diseases. Even after diagnosis, its “on and off” nature then makes it difficult for people to believe that those of us living with it are actually sick.
We are sometimes treated in unexpected or “unfair” ways just because we don’t look as sick as the world expects. We have good days and bad days, some of us have more bad days than good, which makes day to day living extremely difficult.
Ever since my diagnosis a few years ago, I have realized that “Myasthenia Gravis does not have a face until it’s yours or someone you know”. By this, I mean that this disease is only real to anyone living with it or anyone who has a loved one living with it. I have spoken to a number of people about my life with Myasthenia Gravis, most of them feel sorry for me but that’s usually where it ends. Personally, I have learnt to look up to God for help and He has always sent me people who are willing to go all out to help me whenever I needed it.
I remember one of my fellow snowflakes/MGers told me of her experience while traveling in Ghana. She had difficulty walking which caused her to walk slowly and made it difficult for her to climb stairs. In her attempt to get into the aeroplane, the other passengers behind were in such a rush that they didn’t care to find out why she was struggling to climb the stairs, instead they kept shouting at her and making hurtful comments.
The painful reality is that noone will ever truly understand how it feels to be in our shoes. However, all we desire is some empathy. You don’t need to feel what we feel, but you can believe that what we say is true. We know that Myasthenia Gravis is invincible to you, but to us, it is so real. It is our lives.
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