You never imagine that your life could change in an instant.
You never imagine that your “normality” can get turned upside down and spun around like it’s been let loose in a washing machine.
You never imagine that you will be told by doctors that they don’t know what more to do.
However, this is the reality for many in the rare disease community. I was 15 when life as I knew it came to a screeching halt. I had always been healthy, active, and a relatively problem-free child. So when I started battling to smile, speak, and swallow I knew that there was something serious going on. The pure exhaustion that controlled my body meant that I had to give up so much of what made me happy, such as dance classes, exercise, and just living the general life of a teenager. Getting a diagnosis was a huge relief, as we could finally name the beast that had invaded my body and turned my immune system against itself. But it was also terrifying when we read what Dr. Google said could happen — it was something we had never heard of before.
Fast forward a couple of years, and I finished high school, moved into my own place, managed to get a job, got married, and had more hospitalizations than I care to remember. The first part sounds pretty normal, doesn’t it? But it was tough. I missed a whole term in matric (senior year) due to my health and could never partake in group exercises or team building as my body couldn’t cope. I managed to get all As but that was only through pure grit and determination. There were often days when all I wanted to do was climb into bed and sleep — in fact, there still are.
With a rare disease, finding a job can be difficult. People often don’t understand what the condition actually is or the effect that it has on a body. They don’t understand that when you are tired of a chronic illness, it is very different from their tired! I have had ex-bosses expect me back at work the day after I was discharged from the hospital and tell me I need to plan my admissions better so they don’t fall at our busiest times. I have had to climb under my desk at lunchtime to have a nap to see me through the remainder of the day. I have had colleagues tell me I am rude when I don’t talk, and I have had to take countless days of unpaid leave for all my doctor’s visits and hospitalizations. I’ve had my doctor write a letter explaining the fact that I have a life-threatening condition and when I handed it in, it was simply put into a drawer under a pile of papers. I have been made to feel guilty about being “sick” and like I was less valuable to the company because of this.
Two years ago, we moved to a new province, and the very idea made me feel ill. Never mind the fact that I would have to change doctors after being with the same one since day dot, I also wondered who would ever employ me when I was clearly going through a relapse and needed to rest throughout the day. Plus, to have to explain to someone new what was wrong with me … would anyone be willing to take a chance on me? Would they think I was worth a risk? I am a hard worker and have always given everything my best, but would they see it?
There are still days when I simply want to stay in bed and cry or sleep, but I also know how important it is to keep busy and keep my brain active. I also need to know I am not a burden on my husband and be able to at least give something toward our monthly expenses. I may never be a millionaire, but my heart is happy, and I feel better about myself knowing that I am helping others. I want my life to have purpose and don’t ever want to be stuck in a job that I am merely doing as a means to an end. I want to make at least one person smile every day, and will always try to find the silver lining.
With all of this said, I feel truly blessed with the work I have and hope to continue doing it for a long time to come!
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.