[Written by Meghann Patterson (she/her)]
[Content warning: Discussions of chronic illnesses]
I was 16 when I was diagnosed with a chronic illness. Sitting in the hospital waiting room, being the youngest there by at least 40 years, I had never felt more alone. The nurses gave me pamphlets about support groups and chatted to me about medications with names I still find hard to pronounce. Nothing could have prepared me for the alienating thoughts I would have, compelling me to isolate myself from loved ones. Yet, as alone as I felt, I wasn’t. According to the Association for Young People’s Health, 23% of 11-15 year olds report having a long term illness or disability.
So why do so many young people still feel like they are going through this alone? This was one of the foundational questions in setting up LUNA. The LUNA Project, Learning to Understand Needs and Abilities, is a charity that supports young people with chronic illnesses, disabilities, and long-term health conditions. They run workshops and school outreach sessions to encourage young people to have conversations about disability and health conditions. They also have a podcast and blog which allows those living with these conditions to tell their own story. We had the honour of chatting to Ally Lloyd, one of the co-founders of the LUNA project, and Laura McCafferty, LUNA’s Research Development head, about their experiences of living with a long term health condition.
What inspired you to set up LUNA?
AL: We set up LUNA just over a year ago: myself, Beth and Ross, two of my close friends. We’d had a really crazy year with our health, disabilities and chronic illnesses. We felt very much like this was all happening inside our little bubble. It felt like no one really knew about this stuff, but [we knew] it must be happening to loads of other people. We had this realisation that the only reason things were going okay for us was because of our supportive friends. We had taken that for granted until we talked to other people who were in similar situations and they said that one of the things they found hardest about having a chronic illness was the lack of supportive friends. We decided that this was something that we needed to share, to find ways to include more people in the conversation.
What impact do you think having a chronic illness has in trying to build these supportive relationships?
LM: Because of my chronic illness, I can’t drink alcohol. Having that conversation with people, especially when you’re at uni and going out drinking is such a big way to meet people, can be hard. People ask why you’re not drinking. I find it hard to talk about my chronic illness to people I’ve just met and even sometimes to people that I’ve known for a long time! So, sometimes it’s easier to lie about it and make up some excuse about why I can’t attend, which is quite bad on my part, but it stops people asking me questions. Sometimes it can feel like the understanding isn’t there, so I find it easier to kind of brush it off and say that I’ve got a family event or something.
AL: I totally agree! It’s weird because often it’s one of the first interactions I have with people. You end up feeling like you should be having quite an intimate conversation about something that is really personal to you. It’s not that deep and it’s not a big part of who I am, but on a day-to-day basis, it has a huge impact on my life, so it does end up coming up a lot. When it’s things like ‘Do you want to come and do this’ or ‘Why weren’t you here yesterday?’, I end up in a situation where I have to have this very vulnerable conversation with someone I barely know. It can be a lot easier to say I was busy.
Going with that, do you think that over the recent years there has been an increased social awareness surrounding long term conditions?
AL: I would say around me it feels like there has been, but maybe that’s biased. I only became ill a couple of years ago and since then I have been having more and more of these conversations. Statistically, if you’re in a group of 5 people, and you mention something to do with having a chronic illness or a disability, the chances are that in that group someone will say ‘Oh, my flatmate has this’ or their boyfriend. It’s actually not as lonely as you think it is, it just requires one person to start that conversation. In recent years, I kind of realised that they are more common than you think, and as I got more confident I’ve been that person starting these conversations.
LM: I agree. Once you start, you find out that many people do know about chronic illnesses and disability. I think there is still a stigma when people haven’t been exposed to chronic illness and disability. In my experience, the idea of relapsing can be quite foreign to people. If I tell them I’m sick, and a couple months later I tell them I’m sick again, they can kind of get lost. But when you start having these conversations people quickly pick up on what you’re talking about and are willing to look it up themselves. So in that sense, things are definitely getting easier and people are a lot more willing to take the initiative to learn.
How has living with a chronic illness impacted your relationship with your body, particularly in the world of social media which, at times, feels so focused on aesthetics?
LM: When you’re living in a body that has failed you so many times, and not allowed you to do the things that you want to do, it’s hard to love it. In terms of aesthetics, I’ve got ulcerative colitis, which means I can lose or gain a lot of weight in quite short periods of time because of the medications I’m on. It can feel like you’re not living in your body. When you look in the mirror or you’re looking at pictures you don’t look like you and it can be quite hard to learn to love your body when it’s constantly shifting like that. It’s like, on the one hand, I feel foreign in my new body but on the other hand, chronic illness has kind of liberated me from thinking about how my body looks. It’s gotten me this far and it works. I’m a lot more comfortable with my body and I think part of that has to do with my chronic illness. So, I guess I’m grateful for that.
AL: There have been times where I’ve been really ill and been in the hospital. The nurses would help me shower and get changed but I couldn’t be self-conscious – for them it isn’t a big deal. All day, every day, they see different bodies and at first I was like ‘Oh my gosh, this is so weird’, but in some ways it was kind of liberating because for them it’s not a big deal, so why should it be for me?
Looking at social media and this wave of self-acceptance that we’re experiencing, do you think it’s providing a space for people with disabilities and long term illnesses?
LM: I think so. One of the things I’m noticing on social media is disabled people taking back their own narrative. There’s a lot of ‘Inspiration Porn’ which can be quite harmful: portraying disabled people as only useful when they’re someone to be inspired by. It produces the idea that disabled people should overcome their disability rather than society be made accessible for them. On social media I’m seeing more disabled people taking control of their own narrative. They’re showing what disability looks like and all the amazing things they can do while also showing the reality of disability and the ways society can be inaccessible. I feel like it has really helped someone like me, who’s had such a strange relationship with their body, to see other people post on social media and talk about the same things that I go through.
AL: There’s not one kind of a disabled body image on Instagram. There’s a whole heap: queer disabled people, disabled people of colour, people with invisible illnesses, people with very visible disabilities. That representation is wonderful. Often it’s not even people having overt conversations about their relationship with their body but seeing that people like them exist.
What is something that you think able-bodied people should be aware of in supporting their peers with a long term illness or disability?
LM: If my colitis is playing up, and I may not be able to go clubbing, or go out somewhere that we had originally planned on, sometimes they’ll stop inviting me. It’s nice to be included. With chronic illness and disability, there are some things we can’t do but there’s a lot that we can do. It’s nice if we don’t have to be the ones constantly pushing to be included. For example, if I’m sick and I can’t leave the flat, it’s nice for friends to offer to come around and watch a movie or something, just to make it feel a little bit less lonely.
AL: It really doesn’t take a lot to show that you’ve thought about it. If you’re going out with your friend who uses a wheelchair, before you suggest a cafe just have a quick Google to see if it’s wheelchair accessible, and don’t suggest it if it’s not. If you’re going out with your friend who’s hard of hearing, pick somewhere or pick a time that’s going to be quiet so you can chat. Otherwise you get in a situation where you make a suggestion, and they end up feeling like the problem because they have to say, ‘Oh, that’s actually not going to work for me. Can we do something else?’ If you were going out with a friend who was vegetarian or vegan, you wouldn’t be like ‘let’s go to the steak house’. Take that extra bit of thought, listen and do your own research.