Positively MG – Megan Hunter

Hearing the words “you have a rare disease” is not something you ever expect. Nor is it anything you could ever really prepare for. But unfortunately, it does happen — and it may have happened to you if you are reading this. Going to a general practitioner when you have…

As a part of the rare disease community, I interact with many people who have unique differences to what society deems “normal.” They may have ports or permcaths, feeding tubes or nasogastric tubes. Perhaps they are in a wheelchair or walk with a limp. They may have…

Last weekend, I was lucky enough to attend an Ed Sheeran concert. Passenger opened for him, and I danced the night away, smiling so much that my cheeks got sore. I have been to concerts before, but never any quite like that one. It was a long day, but luckily,…

When I was first diagnosed with myasthenia gravis, I already was headed for a crisis. I had been battling symptoms for a couple of months, yet all of the doctors told me they were psychosomatic. They said that if it wasn’t anorexia, then it must be something similar. By the…

When I received my rare chronic illness diagnosis, I felt like I was all alone in the world and nobody truly understood what I was going through. My friends and family felt sorry for me, but they didn’t understand the extent to which my condition affected my life. I was…

I have been housebound since my stem cell transplant and was starting to get rather crabby about the whole situation. I am used to independence — visiting friends and going to work — so this has been a very trying time. However, it has also been good…

Last weekend, I watched the movie “Wonder” again — for probably about the fifth time. The first day it was released in South Africa, I sat in the cinema crying my eyes out. Since then, I have watched it whenever I have spotted it showing on the television, as…

When someone with a chronic illness says they are tired, they don’t simply mean, “Oh, I could probably do with a nap.” They mean that their body is beyond exhausted, that they can’t keep their eyes open, and that doing simple daily tasks is just too much. Recently, I had…

“I’m going in for chemotherapy.” That was my response when people inquired about my treatment plan. “But you don’t have cancer.” That was the reply I got from most of them. “So it can’t be that bad. I mean, it can’t be real chemo, can it?” How do you determine…

Last year, I had a port fitted. This is a small medical device placed under the skin just under the collarbone. It allows for drips to be set up without nurses having to dig around for a vein. It also frees up my hands and allows me to easily…

For the past two years, pipes have been sticking out of my chest. I have had a port beneath the skin just under my collarbone. Many treatments have caused me to catch numerous infections floating around, so I have had to wear a medical mask when in public. I have experienced…

It has been a while since I have written a column. So much has been happening, but at long last, I am able to sit back on the couch and not immediately pass out from absolute exhaustion. So, I thought it would be a good time to write a little…