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By Ally Lloyd (she/her)
The loneliness that came with epilepsy is one of the things that has taken me most by surprise and that I have found the hardest to manage. I feel we all know the difference between emotionally and physically alone, but it feels an important difference to emphasise. Especially because I would be doing an injustice to so many of my friends and family to say I have been physically alone with my epilepsy. For every hospital stay, or coming around from a seizure, or even wobble about something epilepsy related that’s actually not even a big deal at all, I have always had one of them holding my hand, sometimes metaphorically but very often literally. For this I am always grateful.
That is not to say it never made me physically alone, particularly in the beginning, around Spring 2018. I can pinpoint moments of feeling physically alone. Lying in a hospital bed at night in the dark on a busy ward, not entirely sure why I was there aged 17 feeling scared, the next youngest patient 75. Or, being told I could not be a part of the gymnastics trip I had been a part of for the past six years because of my health. The group of girls that had become a second family and one of the strongest parts of my support network would be training and going up to Scotland whilst I would be in Leeds. Or, sitting in the Common Room at school watching my year group empty out, feeling too tired and post-seizure-y to manage the stairs up to my Form Room with my peers.
For the most part though it is the feeling of loneliness that is an unexpected consequence of epilepsy. I found this especially when I was first diagnosed, where the first few weeks were just a whirlwind of new experiences brought by epilepsy. These were experiences which none of my peers had experienced which made me conscious of whether I was fitted in with them anymore or not. From having seizures, to ambulance rides, medications, and so on. With each new experience, I was conscious of a ‘experience gap’ if you could call it that, growing between them and me. I felt myself deviating from the norm, a place with my friends and family that had always felt so comfy, to a place that really didn’t.
This is something that definitely did get better over time, as my friends and family and I communicated better and shared more experiences, and they understood more. My mum trawling through websites and on the phone to helplines, and my friends sat in cafes asking and asking until they had the “ah” moments. However, I do still find aspects of days lonely, in a way that is continuous and underlying, often about the little things, before doing things the “what if I had a seizure…?” , worrying about something as basic as a shower or making a cup of tea. Therefore, throughout all of this there has been this desire to meet someone who was in the same boat. Those around me told me frequently that I “wasn’t alone” and that “epilepsy’s really common” but those felt such abstract things, unlike the loneliness I felt. I wanted to see people who were like me. People who were managing life that I could look to and think “I can…”, but also people who validated the difficulties that came with it all.
I guess part of why it feels so lonely is because by the very nature of epilepsy, and all invisible illnesses, you cannot tell who else in the same boat. Maybe the person opposite you on the bus is worrying about seizures too, or the person in your lecture is adjusting to a new medication, or the person in the café just home from a hospital stay. I think things would feel a lot less lonely if you did know this, but my tendency was of course always to assume that they were not, because how would you know? One way you can get a window into these parts of people’s lives however is through social media. Social media, for all its flaws at times, can allow for people to show the things that cannot otherwise be seen, and for people to make the connections they wouldn’t have otherwise made. This was the case for me and Mirren anyway. Mirren spoke a wee bit about having seizures on her social media in November 2019 and Ross as one of our mutual friends was able to make the connection. It really got me thinking, because Mirren and I had so many mutual friends it was more than likely that not only would we have been on the same bus, lecture or café, but even chatting in the same party and not have made this connection, that we were both lonely in this same way, because it’s not exactly small talk. Even before meeting her it changed the way I think. Now more do I look at the people on the bus, in my lectures, and in the cafes, I sit and think that they could be just like me.
When Ross told me about Mirren, I was really keen for him to put us in touch. I knew the loneliness associated with ill health that I was sure she was feeling. I also knew that meeting people in the same situation could make a difference to that in a way that I couldn’t, and still can’t quite, describe. Earlier that year, in about April 2019, I had been involved in a project with Epilepsy Action around creating a resource for young people. As part of this there were these big face to face meetings. Being sat in a room with about fifteen other young people all whom had epilepsy was an experience I hadn’t realised how much I had needed. Throughout the day I would look around and just have these moments where the whole “you’re not alone” became that bit more tangible. Even when we were just sat listening, I felt this kind of connectedness and this shared understanding between us all. They were all amazing individuals, and when they were talking about their jobs or where they lived, or the holiday they had been on, or their friends, I couldn’t stop nodding and smiling because looking at these people and hearing these things there was this sense of I could have this too. It was with this experience in mind that I knew that Mirren and I meeting up had the potential to be a really positive experience for the both of us.
So, we did arrange to meet up, and if there had been a catchphrase from our first time together, it would have been “literally”. We met up for coffee and food, and we talked and talked and talked. I first checked the time two-and-a-bit hours in to see that I was already late for where I needed to be, but not at all ready to leave. Any worries I had had about things being awkward or not getting on were completely left behind. In some ways, it was quite a weird experience, because only having met a matter of hours ago we were talking about things we would only talk about with our closest friends and family; bad experiences and fears, hopes and thoughts of the future. We were completely on the same wavelength and it felt so refreshing to be able to have the conversations we had both been craving but unable to have with others.
It also re-affirmed the importance of “role models” (if that’s the word to use?) for me. I looked at Mirren, and all those other young people I saw at the Epilepsy Action Project and saw things that maybe I could have. A degree completed, travels to places I really want to go, a job that sounded really cool, a relationship that works well. Things that may overtly seem really normal but when you don’t see other people like you doing these normal things, it gets really hard to imagine that you ever could. I think you often don’t realise know much your peers and friends really are your role models, until you don’t see yourself quite match up with them. I was conscious when I was first diagnosed of how lucky I was to have to have Beth as a friend, both just as a genuinely wonderful friend, but also someone to look to. Whilst she was not in the same situation as me, our situations had a lot of overlap, and she became a fount of knowledge. More than that though
I found it a great source of comfort that I could look to her and see her doing all the things I wanted to do but just didn’t know if I could. It was around the time of thinking about uni, and summer travels, and part time jobs, all things which she was just doing. Whilst I think we all know that Beth truly is just something else, and of course circumstances are different, I found being able to look to her the beginning of so many “maybe I can…” thoughts. Even now, so often I look at my amazing friends doing wonderfully at, say, uni, but I can’t really see that for myself. Whereas when Mirren talks about her course, both that first time in the café and now, her passion and competency is so clear, I feel a kind of hopefulness, that with our similar challenges if she is managing to do this that and the other, then why not me?
Now, our friendship is just a normal friendship really, two people who like each other, have lots of shared interests, and see each other regularly. We also just have that extra something that brings us that bit closer. When we go for coffee, yes, we talk about health and hospitals, but a lot of it is just really normal talk about uni, friends, plans, music, things we have been up to. We often see each other as part of bigger groups too, as friends do. This is something that can be a bit more nerve-wracking when you have epilepsy though and so knowing that someone both knows how you will probably be feeling and will be looking out for you and has your back can make all the difference. For example, we both ended up going on a night out for a mutual friend’s birthday. For Mirren it had been quite a last-minute decision to go, as she hadn’t felt comfortable enough with going out in a long while, although it was something she used to love. We had the best time, and it was completely not a big deal that she had a seizure. I had noticed that the lighting went all weird so checked if she was okay and she said she thought she was going to have one, so we went and found somewhere quiet with another friend, and then headed off to Maccies, having had a really lovely time.
I would encourage anyone living with a long-term health condition to reach out to those around them and try to make connections with someone in the same boat, or even just on the same sea, as them. It truly can help with a loneliness you might not even know you are feeling. For me and Mirren, I know that it is going to be a long and positive friendship. I am rooting for Mirren that things get better for her soon but know that we will be keeping each other company throughout it all.
(Originally published 28/2/20)