I’ve wanted to write a blog about loneliness for many years but kept feeling unsure how to approach it and how to convey my feelings. Even as I write this now, I’m still not sure how best to explain these thoughts. Being disabled comes with many physical and emotional challenges but I find loneliness to be the hardest and most complex challenge of all.
Firstly, you are probably thinking, “Emma, how can you say you’re lonely? You are supported by your parents and carers, have great co-workers at Disability Horizons and amazing friends who love you!”
Yes, I do but sadly enjoying their company isn’t always easy due to requiring assistants, distance and availability. Plus, my idea of fun and entertainment differs from those around me. There are even times I find I have more pleasure when I’m alone than when I am with other people.
Making and maintaining relationships
Last month I was sent a copy of my care assessment report and this sentence caught my eye: “Emma is unable to make and maintain relationships with others and unable to arrange her social life independently without the support of a carer/PA.” This is true to an extent but not accurate.
As an individual, I am more than able to make and maintain relationships independently. The barrier I face is needing a PA/carer to accompany me to meet people.
For instance, if I meet up with friends, I need the PA/carer to drive my Motability vehicle and then help drive my wheelchair due to my poor vision. Then when I’m with the friend(s) I may need help with reading menus, food, drinks, removing a coat, using the toilet etc.
Also, if friends were to come to visit my house, I need my parents or PA/carer to act as hosts as I cannot provide the food and drinks.
Therefore, I feel I don’t get as much privacy with my friends, meaning we can’t chat as freely as we would like.
Another issue is the distance in which most of my friends live. It isn’t like we can just pop over for an hour one afternoon. If I had the ability, and because I’m an awesome friend, I’d quite happily drive or get a train to visit friends in places like Cardiff, Bristol, Northampton and London most weekends and sleep on their sofas.
However, because I have to rely on carers for support and the physical constraints of my personal care, this is not possible. I feel it can be a military operation just organising one weekend visit.
Of course, one way I could make frequent relationships is by meeting people more local to me. I know a couple of people in the area whom I used to know in my mainstream school days about 15 years ago but we’ve kind of lost touch. It was also suggested to me I attend meet and greet groups or other social clubs and meet new people that way.
Again, I’m more than capable of talking to people but the biggest issue is relying on my parents and/or carers to accompany me.
For example, if I was going to a quiz night at a local pub I would need a PA to guide me to a table, get/hold my drink and write down answers. The room would be rather dark and loud for me so communicating would be difficult. I can’t see if somebody is smiling or waving at me and unless they say my name I can’t tell if they are talking to me, so other people may think I have a learning disability too or I am just ignorant. Also, other people are more likely to talk to my PA rather than me or assume I’m not alone because my PA is keeping me company instead.
The same can be said for dating. I’ve never done it, purely on the fact I’ll need a PA to take me and assist me with food, drinks and toileting. I would find it extremely uncomfortable going on a date and having the PA either sit with me or sit at another table waiting to help me. At the same time, I wouldn’t expect my date to assist me, especially when we are just getting to know each other.
I know there is the other option of attending social clubs catered for disabled people but I feel I shouldn’t just be surrounded by disabled people. I feel a lot of these services are tailored for people with physical and intellectual impairments and so I don’t think I’d fit in. Plus, some of them run during the week and as I work full time, this wouldn’t be possible for me to attend anyway.
The additional issue I currently have is I only have my parents available to support me when out and about since I moved back in with them in June 2022 and I feel rather uncomfortable bringing them along as my PA in new social settings. At present, I’m waiting for my new care fund package to be decided then I can start seeking PAs who can hopefully accompany me to some social events.
I feel the best place I can socialise unaccompanied is at drama classes. I’ve been attending theatre groups since the age of 10 and even met my oldest friend Pluggy there. It’s the one place I can interact with other people in a well-lit, large, quiet room and be myself (and act out other characters of course!).
I was gutted when I had to leave the Westy drama group in Aldershot in May 2022 but I hope to find another theatre group in the Portsmouth area. If anyone can suggest a group in the area that is accessible and inclusive, that’ll be great.
Enjoying social activities with others
My two favourite things in the world are music and football. I love listening to music when I work, getting dressed, in the shower, in the car and most of all when attending gigs and festivals. I’m a fan of Portsmouth FC and love following all forms of men’s and women’s football but only attended a handful of games in my life.
Again, if I had the ability, I’d go to concerts and football matches every weekend. But relying on PA/carers is always the issue. It’s not just getting someone to accompany me that is the issue but finding people who actually want to enjoy events with me.
Also even when I watch live music or football on TV, I feel even more alone because I have no family or friends who want to watch it with me. I still have a great time watching it but it saddens me that I can’t share my enjoyment with others.
The loneliness really hit me during this summer’s Women’s European Championships. I watched every game by myself and when I tried to make the final a social occasion with my parents, they had no interest and acted as if they were at a funeral. Yes, I need them to keep their voices down slightly so I can hear the commentary but there is no need to blank me completely.
What infuriates me the most is it was my Dad who got me into football and now he has no interest in it. He thinks checking the scores on his phone is being a football fan – no it’s not!
I just wish I could have more local friends who had similar interests as me and could enjoy my favourite music and football with me and maybe accompany me to live events as mates.
Multimedia companionship
On the plus side, what can lessen the loneliness is watching and listening to performers, players, presenters, commentators, pundits and other types of people who have the same interests as me and can entertain me.
Although I can’t directly speak to them and have occasionally tried contacting them via email, text or social media, I still feel a connection with them. For instance, I celebrate, commiserate, laugh, cry, agree and debate with football pundits and sing, cheer and dance when watching live music on TV.
Another tool that I use to combat loneliness is radio, podcasts and audiobooks. Again, I have no direct contact with these people and may never get to meet them but I feel they give some companionship to my life.
This includes the team at The Chris Moyles Show on Radio X. I’ve been a fan of Chris Moyles since the BBC Radio 1 days. Although I’ve never met or spoken to the team before, I feel like they are an extended family to me as I listen to the show every day, plus the weekly podcast. I know almost everything about them and follow the highs and lows of their lives. They continuously make me laugh and put a smile on my face.
The same can be said for Chris and Rosie Ramsey on their podcast Shagged, Married, Annoyed. I’ve never met them either but know almost everything about their lives, children and family. They are both hysterical and get me in fits of giggles every week.
I also feel a sense of companionship and belonging in other podcasts too including lABLEd, The Wittering Whitehalls and a range of football podcasts.
In addition, I find audiobooks a good source to alleviating loneliness, particularly autobiographies. The person who wrote the books tends to narrate it and it feels like they are speaking to me. Also, many of these books discuss issues such as disability and mental health, which I can relate to.
A virtual work environment
I definitely prefer working from home and I feel I get more work done when working independently. However, it is still sad that after 10 years of working at Disability Horizons, I’ve only met some of the team only once at Naidex. The rest of our communications are via Zoom, email or our messaging platform Bitrix24.
Although virtual working is more accessible to us, I do feel we have less time to social chat like we would in a real office environment. We have our annual Christmas party, which is fun but still has restricted time and is on a screen.
If it wasn’t for the fact we live all over the country, have different healthcare needs/caring for relatives and have other personal commitments, we could get together for a meal or drinks every month or so.
Loneliness within the family home
Although I require 24-hour care and now live with my parents, it can still feel extremely lonely at times. Doing personal care, household tasks and preparing meals is not a social activity, it is a necessity. I may be surrounded by people but I sometimes find that more lonely than being alone.
For instance, I enjoy having music on while doing personal care but I can’t have it because my mum or carer has a headache or doesn’t like it on. Therefore, I have to compromise by enjoying my music in my own time, which is fun but lonely.
I also love watching TV and films but my parents and I have different tastes in shows so I mostly watch what I want on my TV. However, there have been times I thought my parents wanted to watch a series with me but only to discover they’d already watched it without me. I’ve given up trying to watch TV with them now.
Another difficulty I’ve been facing lately, not necessarily loneliness, but more like awkwardness. When I was living at my own house in Alton, I would usually eat my meals in the lounge in front of the TV. Now I’m living back with my parents, I decided it would be nice and thoughtful of me to eat meals together at the dining table.
However, I felt there have been times that I don’t feel particularly welcome at the table. Sometimes my parents (mostly my dad) seem to have very minimal conversations or speak in monosyllabic wording around me. I feel as if I’m treated like a child and they don’t want me to overhear their conversations. I understand they have the right to privacy, but if they don’t want me to hear any of their conversations, then why should I bother eating with them?
Some meal times they’ll just sit in stone silence, which I find extremely awkward. Also, because it takes me longer to eat a meal, they will finish their meals and then basically sit there and watch me finish my meal, which I find really uncomfortable. I would prefer they talk amongst themselves (and thank mum for the meal – dad!) or just leave the table and start the dishes.
On those occasions that they just sit in silence, I wish I could just go into my little lounge room and eat in front of the TV instead. Meal times are meant to be a sociable activity but sometimes I find eating alone is an easier option in this household.
I think the evenings and weekends are when I feel most lonely. Most people can spend time with their spouse, offspring, siblings, roommate etc but despite being a tenant in my parent’s home, I still feel I live alone.
My parents and I have different ideas of what fun is and I understand they want to do their own thing. It just frustrates me that I have to rely on people in order to meet people.
The same can be said for carers. Although I do try and choose carers whom I’m going to have a good working relationship with but at the same time they have to maintain professionalism.
There are times I’ve had carers who are good at their job but we have nothing socially in common. We’ll discuss my care routine and other daily tasks but no casual chat. So, I could literally spend all day with a carer and still feel lonely.
Loneliness is a complex feeling and there is no easy way to stop it. I’m not saying I need someone to spend every minute of every day with me. I enjoy my own time too but wish I had the freedom and flexibility to see people with similar interests to me whenever and wherever I please.
Omg Em you read my mind. I’ve actually typed something similar and deleted it. I’m afraid I’m not a football fan though