Loneliness is a tough conversation to have and anyone can truly be affected by it, however A 2017 UK Government study* found that 67% of disabled people have felt lonely in the past year and those with a long-term health conditions or disability were 56% more likely to report loneliness than those without.
As a disabled woman, suffering from CFS and Fibromyalgia, I am currently unable to work, it was a hard decision to make and took a lot for me to drop my pride and acknowledge my circumstances. There are weeks at a time where I will not be able to commit to friends, plans or anything other than laying in bed in pain. That isolation is truly the battle of my life. It can be hard feeling trapped by your pain and with most of my friends in work, study or having children no one is really around to relay on for company. Don’t get me wrong, I have a long-term partner who I adore and a healthy selection of family and friends to relay on for love and support but sometimes you need to speak to someone who truly understands and recognises your daily struggles. With that in mind, I wanted to speak to some people in similar situations, to hear their account of disability and loneliness.
“With having anxiety, depression and autism feeling lonely isn’t something I’m somewhat used to. I guess that’s a part of being introverted. I feel most lonely when something happens that makes me realise, I’m different; this can be anything, from stemming in public to negative interactions with people that I feel my autism has caused.” Amber – 21, Autism
“It makes me feel lonely inside as sometimes the pain is indescribable and feels like it will last forever. You actually feel like you’re being punished for something because I don’t believe anyone should ever have to suffer the way fibromyalgia affects your whole body and even mentally affecting those around you closest.” Natalie – 28, Fibromyalgia
“I honestly did not know that the isolation from living with a chronic illness would be so crippling. There aren’t any words to describe the roller coaster of emotions that you feel during your journey. I keep things about my diagnosis and my treatment to a minimum to those who are not my boyfriend, my immediate family. I often find that I have to defend myself to my friends because they don’t understand that I can’t do the same things as them all the time.” Kaitlyn – 23, Complex Regional Pain Syndrome (CRPS)
“It’s often hard to share how lonely you can be sat in your home seven days a week. You feel like the people who support you would be upset or offended if they knew you was lonely, as if their company isn’t good enough but It’s hard once everyone is gone to just be left with your thoughts and difficulties” Paul – 31, Long term spinal injury
The one thing helped almost everyone I spoke to was building a network of not only family and friends, but people in our shoes. Yet, we all admitted to struggling to start that conversation; out of fear of rejection, invading someone private life or just not feeling worthy of another person’s time. We often hold ourselves back from connecting with the very people who understand our story the most, when it could be as simple as a direct message or a phone call.
We often let our loneliness over take our lives and keep quiet about the effects it’s having on our mental and physical health. This not only keeps us in the sickness circle we live in but creates a culture of shame and silence around disability. We need to see each-others progress and share our worries with each other. Start conversations about disability issues and support each other through the worst days.
“People can help by supporting you with love and positivity but it still comes down to they will never really understand what it feels like?” Natalie, 28, Fibromyalgia
“I feel most supported when people make sure I have not only the physical aids I need but also the emotional, checking if I want to go out for the day and take part in activities” Paul – 31, Long term Spinal injury.
“Having a community of other individuals with similar conditions has been the most incredible thing for me. There is something that is really comforting and special about being able to talk about your feelings with another person who truly understands what it means to be in your shoes.” Kaitlyn – 23, Complex Regional Pain Syndrome (CRPS)
If you are a family or friend of a disabled or chronically ill person, that love and support is so valuable and it’s clear from my own experiences and talking to others, that the main part of our daily successes comes from that support but there is something we need to do for ourselves and that is to connect with each other.
Help us to find the confidence to join social groups (Disability or otherwise), encourage us to find an outlet for the frustrations that grow with our limitations. Help us overcome our struggles physically, emotionally or mentally to keep us socialising as part of the greater society. There is so much power in knowing your not alone, it makes the fight a little less daunting and more of a shared experience where we can celebrate our littlest victories and share our biggest fears.
I want to say a huge thank you to Amber, Kaitlyn, Paul, Natalie for sharing their feelings of loneliness with not only myself but with the greater world online. I also want to say thank you to everyone who got in touch with their own feelings but didn’t feel ready to share. It’s clear that we all feel lonely from time to time it’s been a real roller-coaster reading your stories.