As discussed in my last post, it’s hard for me to imagine how different my four years at university would have been with myasthenia. Because I can only guess, I asked the Myaware Young group for real experiences of people who have studied, or are currently studying, with MG. Three lovely ladies were happy to share their thoughts and I plan to post them in three separate blogs to give them the space they deserve to tell their stories.
Gabrielle Petruso, who currently studies medicine, found her university supportive due to a ‘brilliant’ occupational therapist.
‘Mine was supportive but a lot of that came through seeing a brilliant occupational health doctor who acted as the go-between. I had to have a “case conference” where I met with occ health, the welfare lady for our course and the curriculum lead. That was in the early stages of diagnosis.
‘It’s definitely affected my uni “experience”. I used to (probably still do) tire very easily in the evenings; going out-out to bars in groups kind of fizzled me out. I couldn’t really cope with dancing or standing for long periods and there aren’t many places to sit. I’ve never been much of an alcohol drinker but I do notice a slight increase in symptoms when I’m already flaring up a bit if I do drink anything.
‘I do feel like I’ve missed out quite a bit, medical students go on electives towards the end of their training. I’d been planning/saving to go work in a hospital in Africa for 18 months before I was diagnosed a few weeks before my flight! ‘
So I missed out on that experience, and had to explain when everyone was back why I hadn’t gone and listen to their wonderful experiences.
It affected relationships too – I was on placement geographically quite far from most of my friends this year which normally wouldn’t have been an issue as I was in my 3rd year too. But MG quite often meant I had to evaluate if late night travel or poor sleep on someone’s sofa was really worth it the next day!
With the academic side of uni, I think it made me more anxious.
Because I was on my clinical year last year I was on my feet a lot and spoke to people nearly all day. Usually this was fine but flares were embarrassing and I was afraid of being misconstrued as being lazy or rude if I didn’t look up at the lecturer or daft/drunk/other if I slurred or spilt my drink all over my front!
The nature of the course meant I was very worried about time I missed, and in that area I don’t feel like I was fully supported by uni. It was made clear that if I couldn’t meet outcomes I’d be resitting the year, so I either didn’t always tell anyone if I was missing time or often went in anyway even if I knew I should be staying home and resting! My appointments were away from where I was placed as well, which was an additional pain.
As a medic your hours aren’t like a “typical” student’s; we had to do weekends, evenings and night shifts and switching between nights and days messed up my symptoms. Taking medication every 3-4 hours isn’t much fun either, and neither are the side effects of mestinon, or propantheline when you need to be able to speak to people all day!