By Mirren Buchanan (she/her)
Hi! I’m Mirren, I’m 19 years old and I’m a Gaelic student at the University of Glasgow. I suffer from seizures, usually a few times a day, and while my doctors believe they’re caused by epilepsy they are still not sure. It’s been a year and a half since I was first hospitalised, and back then the theories for my illness and symptoms ranged from a brain infection, to pregnancy, to a tumour or even possible brain damage. I was in hospital for 5 days and in the end all the tests came back negative or inconclusive. I was sent home with orders to rest more and drink less (I had just gone through Freshers Week).
Fast forward a while (and a few more hospital visits than I’d like), I was still ill, but it was growing worse every day. My neurologist suggested epilepsy, which made sense, but again the test results were inconclusive. The worst part of all of this wasn’t the physical symptoms. It was the loneliness. Over my second semester of Uni I’d stopped going out as much because I was either recovering from a hospital visit (which believe it or not can often make you feel worse, not better), or I felt like I was too ill to manage. The loneliness was exacerbated as the less I went out, the less I was invited, and few of many friends really understood my condition so would make their own judgements on whether or not I should come out drinking with them.
feeling not too fab (on one of many, many, many hospital trips!)
Some friends thought I was overreacting. Some felt sorry for me but didn’t know what to do to help. Some suggested it was all in my head, and despite the overwhelming evidence that I was suffering from a serious chronic illness, I began to believe them. I hit my lowest point in August. Having just returned from the holiday of a lifetime, I was living alone in Glasgow as my flatmate hadn’t moved in yet, and it seemed that every single person I reached out to was too busy to see me despite the fact they had so much time for their other friends. I would sit alone for hours on end during periods of confusion, not understanding why I was crying or even where I was at some points but determined to go on living independently. At the time, it was one of the most difficult points of my life.
I’d like to point out here that I did have an extremely supportive family and a lovely boyfriend to help me through all this, and I’m so grateful for everything they’ve helped me with. But I still had this massive fear that I’d made up the entire illness and some days it felt like there was no one I could talk to. My wonderful flatmate Lara moved in at the start of the semester, but the damage was already done, and I felt friendless except for a couple of friends I’d already known before Uni. A couple of weeks into my second year I reached breaking point and broke down on the phone to my mum. I told her how scared I was, how lonely I was, and how sick I felt all the time. In turn, she told me it was okay to ask for help and that I didn’t need to be independent all the time. Everyone always tells you it’s okay to ask for help, but what they don’t understand is how terrifying it is. For me, asking for help felt like a failure (even though it isn’t and if you need help you should ALWAYS ask for it).
But I accepted that she was right, and I began to speak out about my condition and how it was affecting me to my family and friends, and a little on social media. It was through this that Ross (who you should already know) reached out to me and told me that his friend suffered from seizures too, and if I ever needed someone to talk to then she’d be happy to talk about it all with me. This friend was Ally. I don’t think I can put into words how happy Ross and Ally reaching out to me made me. Even now I struggle to describe it, but I think the main reason was the feeling of validation it gave me, and proof that someone was listening. Me and Ally chatted a little on social media, and then arranged to meet up in person for brunch.
I was nervous before meeting Ally for a few reasons. First, I worried that we wouldn’t even get along. Exchanging a couple of hopeful messages on Facebook is far different to spending an hour or so in a stranger’s company. I also didn’t want her to think of me as a charity case, or for me to feel like that during our meal together. Often when I’ve told people about my condition, I’m met with pity which I definitely didn’t need any more of. And finally, I was worried that my situation would feel inadequate to hers. I wasn’t even diagnosed with epilepsy (and am still not), whereas Ally had been diagnosed and had seizures which were quite different to mine in a few aspects. All of my worries faded away as soon as I met Ally and realised what a wonderfully kind person she is (and the best listener!)
Ally and I
Meeting Ally changed how I thought about my illness. I realised that I am a person with an illness, not an ill person, and though that doesn’t sound like a huge difference it definitely feels like one because it was so easy to lose sight of who I was in the weeks I spent alone. This was because I’d finally met someone who instantly knew what I was talking about when I mentioned things about my brain and understood me without me having to go into a ridiculous amount of detail or give them my whole life story. Having a friend who is in the same situation has actually made me appreciate it when other people ask about my condition – it doesn’t feel like a chore to explain it anymore, and I know they ask because they care.
I also felt more validated as a person who was living with a disability. For so long I hated the thought that I was a ‘sick person’ as I was pretty healthy for my entire life up until my late teens, but Ally seemed to be someone who despite having an illness also had a social life and a sunny outlook on life (I think sunny is the best way to describe Ally), and it made me more confident that things would improve for me – and they did! She was and still is a great example to me of someone who doesn’t let life with a disability hold them back, and someone who I knew was always just a message away if I needed anything. I’m sure I asked her countless ‘Is it just me that has this …?’ questions when we first met.
Meeting someone in the same situation as I am has made it so much easier to open up to my friends, family and partner about my condition because it’s finally starting to feel a bit more ‘normal’. Everyone always tells you that you’re not alone, which is true, but I felt as if I was the only person in the world who was struggling up to the point where I convinced myself I’d made the whole thing up. The loneliness I experienced almost broke me, but I feel so lucky now to have met someone who understands me, and to be able to appreciate the other people in my life who were always there but I just didn’t realise it. If you are lonely, please tell someone. You have no idea the world of difference it can make.
(Originally Published 24/2/20)