When I moved area to start university I didn't think much about how I would tell people about my health. I had thought about how I might approach the subject with my lectures, but that was about it. I had assumed that it would just sort of come up, and that I would casually explain, and then move on. But it was not that simple.
Until recently I hadn't appreciated the fact that most people who know me from my home town have known me, or known of me since before I was ill. There is so much information that automatically comes with knowing a person through a time like that. They know what I was like before, and how things have changed for me. If I meet someone new in my home town they are generally surrounded by plenty of people who are able to fill them in. I have had so much of the work done for me in the past, and didn't even know it!
When I started university no one knew me, or anything about me. There was a lot of information to get across to a lot of people, all of whom required the knowledge for different reasons. Some just needed to be told to explain things socially; but others must know because it affects me and will inevitably affect them e.g. for lab projects and things. I have handled my explanations with varying levels of success... when they have gone well, I wonder what's all the fuss? But when they haven't, things can seem impossible! Close friends allow time and space for explanation, but others are not as invested and can be difficult to approach.
For the first few weeks I didn't feel a noticeable difference between myself and others, there were only a few instances where I had to explain why I couldn't do something. So I didn't end up saying much. I was feeling really well having had a year off to focus on my M.E. It is hard to know what to say when there isn't actually anything to explain! By the end of my gap year I had started to tell people that I used to have M.E. (wishful thinking).
Having never done this before, I have found that people expect you to know what to say, but it was not the case. At the start of the year there was no way of knowing how my M.E. would affect me throughout my degree, and I still don't know what the future holds. As the year has progressed my symptoms have worsened and I have tried my best to understand and explain them as best as possible.
A lot of things that I have written about in this post may seem obvious, however they are things that I was just not prepared for! A year on from moving to Exeter I have learnt a lot, I have learnt about the aspects of my health that I find more challenging to discuss, and am working on how to improve. Not everyone is as practised at reading in between the lines as I had grown accustomed to at home. Nor should they need to be. I hope that I am getting better at talking about my M.E, now that I've had a bit of practise talking to people from scratch.
Until recently I hadn't appreciated the fact that most people who know me from my home town have known me, or known of me since before I was ill. There is so much information that automatically comes with knowing a person through a time like that. They know what I was like before, and how things have changed for me. If I meet someone new in my home town they are generally surrounded by plenty of people who are able to fill them in. I have had so much of the work done for me in the past, and didn't even know it!
When I started university no one knew me, or anything about me. There was a lot of information to get across to a lot of people, all of whom required the knowledge for different reasons. Some just needed to be told to explain things socially; but others must know because it affects me and will inevitably affect them e.g. for lab projects and things. I have handled my explanations with varying levels of success... when they have gone well, I wonder what's all the fuss? But when they haven't, things can seem impossible! Close friends allow time and space for explanation, but others are not as invested and can be difficult to approach.
For the first few weeks I didn't feel a noticeable difference between myself and others, there were only a few instances where I had to explain why I couldn't do something. So I didn't end up saying much. I was feeling really well having had a year off to focus on my M.E. It is hard to know what to say when there isn't actually anything to explain! By the end of my gap year I had started to tell people that I used to have M.E. (wishful thinking).
Having never done this before, I have found that people expect you to know what to say, but it was not the case. At the start of the year there was no way of knowing how my M.E. would affect me throughout my degree, and I still don't know what the future holds. As the year has progressed my symptoms have worsened and I have tried my best to understand and explain them as best as possible.
A lot of things that I have written about in this post may seem obvious, however they are things that I was just not prepared for! A year on from moving to Exeter I have learnt a lot, I have learnt about the aspects of my health that I find more challenging to discuss, and am working on how to improve. Not everyone is as practised at reading in between the lines as I had grown accustomed to at home. Nor should they need to be. I hope that I am getting better at talking about my M.E, now that I've had a bit of practise talking to people from scratch.
I can really empathise with this post, Jenny. Before I came to uni (in Durham) I'd been at a small Catholic school and with the same group of people for years and years (many since primary school and some even since before reception!) Everyone knew I was ill, and I couldn't wait to get to university and no longer be 'the-girl-with-ME-who-faints-all-the-time' - but that too brings challenges and I found myself having to explain ME and self-disclose for really the first time. Sadly, like you it seems, my health took a nose-dive in my first years - it's not been as 'invisible' an illness as I might have liked, and my days of being visibly very ill have unfortunately not limited themselves to my school days! It's been hard (it's certainly a difficult thing to explain!), but I've thankfully found a lovely group of friends who are incredibly understanding - I hope you have, too. Exeter was one of the universities I looked at, and I remember it being a really beautiful campus. I hope you're enjoying life there!
ReplyDeleteAlso, I've realised(/been told!) that we have a mutual friend! I believe one of your close friends from home is also one of my close friends from uni!! (If you can't guess who she is I can private message you somewhere!) How cool - it's a small world indeed!
With love,
Katharine
xxx
www.katharineandME.blogspot.co.uk
Thanks for your comment Katharine! I find your blog really relatable, as a fellow uni student. I do know who you are talking about! As a consequence I heard a little about your fundraising tea party beforehand. I hope it was everything you dreamed, and that you and all of your friends had lots of fun! You certainly managed to raise a lot of money! xxx
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