About a few weeks ago one of my colleague acclaimed to me "Well, at least you don't have cancer. What ever this new so called rare disease is not that bad."
Absolutely, I agree. At least I don't have cancer, or diabetes, or tumour, or any other disease. But I do have Myasthenia Gravis, & this is a chronic disease, with brochial asthma as a creamy layer and migraine - a cherry on top! A bummer, isn't it?
So what is an acute disease? Acute conditions are severe & sudden in onset. E.g. a broken bone or asthma. A chronic disease means that it is a long-term disease that can be controlled but not cured. This means it's forever.
I will (have to) fight this disease for the rest of my life. Every day is a battle that most people have no idea about. There are days when it would be so much easier to just stay cuddled up in bed & not push myself to get up & go to work with a smile plastered onto my face. There would be days where I am sick of pretending all is fine & just want to throw in the towel. When people don't understand or say that MG isn't that bad, I wish I could let them live my life for one day so they could see the truth & see how well they would cope. See if they would manage walking up stairs when you have to physically lift your leg for every step; or if they could cope with taking almost an hour to eat to ensure you don't choke on any of the food in your mouth; or to make it through a day without slurring your words & battling or struggling with all the might in ut chest to just say a few words.
Would those people truly cope? Would they cope with their neck flopping forward unexpectedly because you have been up reading or doing some minimal chores requiring ur head up?
A chronic disease is a terrible thing to live with - no matter what it is. And it makes it even harder when people haven't heard about it & thus don't understand.
People have heard of cancer, diabetes, migraines etc & they seem to be a lot more understanding about the sufferings in those illnesses. So its simple when they don't know what you are talking about, or don't understand the disease then they assume it can't be that bad.
Please, before you judge us myasthenics... beautifully known as snowflakes (since none of us display similar symptoms n so are different like snowflakes), read up more about this disease; try to put yourself in our shoes & think how well you would cope with your life if the MG was deciding every aspect of it; & gives us to have our down/negative days.
I try so hard to be positive, but sometimes it just overwhelms me & I have my "all-fall-down" days (even those where i fall literally on my face).
Please, love me through these times & don't just give up on me. Know that I will come out of it & I will continue to fight my Myasthenia Gravis & to try be positive every day. It is not easy. I don't like to ooze out the fun from ur plans or to mess up ur day with my unexpected triggers.
I silent sometimes not because I am a snob, but rather because I am having a bad day & cannot physically get my words out, but inside my mind I am chattering like a hysterical monkey wanting to say so many things.
Please do not give up on me! Love me no matter what, & encourage me. I never wished to get sick, it has made me lose a piece of my true self, & it has surprised me too! Sorry for the moan, but I am hurting right now like you cannot believe & I am still in shock at the lack of empathy displayed by some people.
But I am glad god created people like you!
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