Loneliness has become one of the greatest challenges of our hyperconnected world, with over 9 million people in the UK reporting they are always or often lonely. Living with a disability makes a person more likely to feel isolated, disconnected and left out. In 2017, the charity Scope reported that 85% of adults aged 18 to 34 with a disability felt lonely, and that one in eight adults with a disability had under half an hour of daily interaction with someone else. Practical barriers, like the need for accessible transport and spaces, certainly represent obstacles to a more active social life, but a lack of awareness is still partly to blame. According to the charity Sense, 49% of non-disabled people feel that they do not have anything in common with people with a disability and 26% admit to avoiding engaging them in conversation.
In order to bridge that ignorance gap, it is time to bring more stories and voices forward. We asked Sarah, a 32-year-old from Liverpool with Ehlers-Danlos syndrome (a connective tissue disorder that causes her body to stretch and bend excessively, and her joints to dislocate) and fibromyalgia, to talk us through her experience of living with disability and chronic pain, to understand how that intersects with issues of isolation and loneliness, and consider some of the things that non-disabled people could do to make the world a more inclusive and connected place. As told to Cristiana Bedei.
I take each day as it comes, because it all really depends on my health. I try to leave the house once a week, but it’s not always possible. A few nights ago I was out, the cold got into my joints and I just couldn’t move at all the next day. I can’t simply get up and go somewhere, I need to plan it days in advance, really making sure I get time to rest afterwards. I might be really looking forward to something, and still not be able to follow through.
Isolation is a big issue and, as a full-time freelance blogger and writer, I don’t have a conventional job that takes me to an office every day. I’m from Liverpool but I moved to Northamptonshire four years ago to live with my boyfriend Ian, and it was a really big change. I have no actual friends that I go out with and the only other person I know there, even now, apart from his family, is my nail technician – which is a bit sad, to be honest.
Moving away from my family and close friends, I didn’t cope that well, I withdrew a lot and I couldn’t even express how lonely I was feeling to my best friend of 20 years, despite speaking to him every day. There was nothing he could do, as he lives three hours away, and talking to someone on the phone isn't the same as going for a coffee or watching a film together.
Chronic pain is my main challenge and I can’t really predict how that is going to be. When I was younger, I ended up losing a lot of friends because I had to cancel so many times and I stopped being invited places. I didn’t want to bring it up with people, because I would think, Is it even worth it? Were they ever friends to begin with? You start being paranoid and questioning everything about yourself.
I always carried a sense of guilt around – I apologised a lot and I think I still do, although not so often. It wasn’t even big events, maybe just a coffee; it wasn’t holidays or birthdays because I always forced myself to go for those, even if I was in physical agony, so I wouldn’t let somebody down. But the guilt kept building up, it was ridiculous. I felt like I couldn’t afford to lose any more friends, because it had happened in high school and it was happening at uni, too. My abled friends didn’t really get it: as soon as I couldn’t see them as often as they wanted me to, they just cut me off; no matter how good a friend I was. It was kind of like, She let us down six times and we can’t be bothered with her anymore. If more people knew how chronic pain and disability affect people who live with it, they might be more understanding.
Getting a power wheelchair three years ago has opened up many doors for me. I can stay out longer, sometimes for a full day, but I still need someone to go out with me, as I am anxious about access issues, reaching things while shopping, I need assistance getting in and out of my car and having someone there in case my health takes a nosedive while we’re out, so they can get me home. It’s just simple things, but paying attention to whether a place is accessible or if there is enough room for a wheelchair at the table can make a huge difference for someone to not feel cut off.
Flexibility is also key, I think. If I ever cancelled on my best friend, in the past, he would always come to my house so we could watch TV together or he’d change the plans so that what we were doing would suit me. If I call off something on a Tuesday, it’s okay [for you to] reschedule – I won’t feel pressured, I’d feel like someone really wants to spend time with me and that they’re not treating me as a burden. Sometimes I’m in so much pain and there’s no way I could go out and people will be like Oh, we’ll do another day, but I don’t hear from them again.
Just checking in on people [can make a huge difference]. When you’re completely alone and in pain, getting a text from someone you haven’t heard from in a while can really cheer you up. It’s a text, not a miracle cure, so the pain won’t magically disappear, but it makes you focus on something else and it’s just nice. I use Twitter, WhatsApp and stuff to keep in touch, it’s helpful. Although being in your living room and chatting to someone about fashion or these new shoes I bought (because, honestly, my boyfriend is not really interested) is not the same as going shopping together.
Today, I don’t feel too bad and I’m really excited to see a friend for a meal later. It sounds like I’m going on a massive holiday or something, but I’m literally just going down the road by my parents’ house, while I’m visiting them in Liverpool. I haven’t done it in so long and it’s such a big deal, because the other six days of the week I might be stuck at home in pain. Going out, having a laugh and speaking to someone who’s actually there is massive – it breaks the monotony and it really makes me feel like I’m participating in society. I can live off the buzz of one night out for days, even weeks. When you live with a disability that affects your mobility, going for a coffee isn’t simply going for a coffee, and I know I can’t take it for granted.
If you're struggling with feelings of depression or anxiety, don't stay quiet. Reach out to your GP or alternatively contact mental health charity Mind on 0300 123 3393.