When you are diagnosed with a rare disease, you may think that your life is over. You read all of the different outcomes on the internet and begin to fear that the worst is here. Unfortunately, this may be true, but often your diagnosis may be more easily managed than what you see online.
I remember when I was first diagnosed with myasthenia gravis. I was completely overwhelmed at what we had just been told, and I felt like the floor of my world had just fallen out. I was shocked, but at the same time relieved that we finally had a name for what had been happening to me.
And then reality set in. I knew that I had a condition I couldn’t control. I knew that it wasn’t something that simply could be cured by taking a pill. I remember staring blankly at my doctor as she went into more detail about this condition.
Choking on food, slurring, falling over, and general exhaustion at age 15 is something you never expect. I ended up having to take an entire year off school because I was admitted to the hospital so often. The nurses became my new friends, and my hospital room became my second home.
I learned what veins would work for drawing blood, and that the medication they give you for a CT scan makes you feel like you have wet your pants. I learned that sleep was now my favorite pastime, and that anywhere could be turned into a snoozing spot — a bed, a couch, the lap of a friend, or even sitting upright in my doctor’s office waiting room. I learned that eating food is a luxury and not something to be expected. I learned that being able to talk to friends needs to be planned, and that listening is sometimes more important. I learned that sometimes sitting back and observing is the best way to learn more about others — you don’t always need to be front and center.
I still battle with exhaustion. And when I say exhaustion, I don’t just mean being a little bit tired. I mean that feeling when your eyes want to close while you are driving to work in the morning. I mean when you want to become one with the couch when you sit down, and whenever you see a blanket your mind immediately pictures cuddling under it. Exhaustion is that feeling when you wake up in the morning and don’t feel like you have slept the night before. Exhaustion is when your mind is like mushy pea soup and you forget what you were saying halfway through a sentence.
I have had to learn to say no to activities and to climb into bed when I feel the tiredness setting in. I have had to learn who my real friends are, and become more aware of where I am spending my spoons. My time during the week needs to be focused on work. Weekends are for recovery.
So, the next time your chronically ill friend says that she is tired, please don’t say that you know exactly what she means. When she gets upset about another hospitalization, don’t say that she should be used to it. When she has to cancel a meet-up at the last minute, please don’t think that’s what she wanted.
Just love us for who we are. Love us through the good and the bad. Please.
Myasthenia Gravis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.