There is another kind of loneliness we rarely talk about

And this gravely affects people with chronic illnesses and disability.

My new single is out! It’s called Salem and is a song for those of us who’ve been disbelieved, disrespected and mistreated for being sick. Listen and read more here.

Photo by Kristina Tripkovic on Unsplash

I have always felt a sense of loneliness and a difficulty connecting with people at surface level. I, later in life, discovered that as an INFJ personality type this was pretty standard. I could connect with a few people deeply, but I never had a lot of friends. Also, my friends were often long-distance as I have lived in different places — my weekends were often spent alone.

When I became ill with ME/CFS I discovered a different kind of loneliness. Yes, friends left me — but they weren’t my true friends to begin with. I have a small handful of close friends now who I talk or chat to on a regular basis.

If you asked me right now if I felt lonely I would say ‘ mmmm no, I don’t think so’, because in the traditional sense I don’t. I have friends with whom I connect, I’m taken care of and have wonderful company by my parents.

But I have a nagging sense that there is loneliness within me at some level — a kind of loneliness I haven’t been able to explain, until now.

The other day I was reading one of my favourite singer songwriters Emily Barker’s blog post. It was about loneliness and she introduced me to a new book by Noreena Hertz called The Lonely Century: A Call to Reconnect.

I have about two to five minutes in the evenings before I go to bed where I can read something new and I started the book.

Hertz writes:

“A key difference between my definition of loneliness (the one that will be used throughout this book) and the traditional one is that I define loneliness not only as feeling bereft of love, company or intimacy. Nor is it just about feeling ignored, unseen or uncared for by those with whom we interact on a regular basis: our partner, family, friends and neighbours. It’s also about feeling unsupported and uncared for by our fellow citizens, our employers, our community, our government. It’s about feeling disconnected not only from those we are meant to feel intimate with, but also from ourselves. It’s about not only lacking support in a social or familial context, but feeling politically and economically excluded as well.”

There it was! She had put words to something I have felt ever since I became ill. The feeling of being unsupported and uncared for by my fellow citizens, community and my government. That creates a sense of loneliness.

I have friends, yes, but my patient group (and other patient groups especially with illnesses disproportionately affecting women) has been gravely ignored, neglected and downright stigmatised for decades.

As a person with disability I do not get the care and support I’m entitled to from my government — austerity measures and new public management has eroded our welfare states.

All this social exclusion creates feelings of disconnection, powerlessness and, eventually, loneliness.

It’s interesting, because I was about to write my PhD on social exclusion many years ago before I became ill — I hadn’t realised how it viscerally felt.

Hertz continues to write:

“It [loneliness] also incorporates how disconnected we feel from politicians and politics, how cut off we feel from our work and our workplace, how excluded many of us feel from society’s gains, and how powerless, invisible and voiceless so many of us believe ourselves to be. It’s a loneliness that includes but is also greater than our desire to feel close to others because it is also a manifestation of our need to be heard, to be seen, to be cared for, to have agency, to be treated fairly, kindly and with respect.”

How many chronically ill and disabled people feel heard and seen — especially by those in power? How many of us feel we have true agency in a world that isn’t suited to our needs? I don’t think it’s the majority.

I then realised that this is the exact kind of loneliness I seek to convey in my new song, Salem. The kind of loneliness that stems from social injustices done against you, not being believed, being ostracised and stigmatised, being blamed, and being mistreated by those who were supposed to help you. I realised I’ve lived with this loneliness ever since I wrote the song more than ten years ago! The song speaks of the powerless (they burnt my wings today) that we so often feel. You can listen to and read more about Salem here.

Hertz mentions a 2019 UK study of nearly a thousand participants which concludes that experiences of racial, ethnic or xenophobic discrimination increases the likelihood of loneliness by 21%. I am certain that ableist discrimination evokes the same experience.

We also know that loneliness is dangerous for our health (both physical and mental). On top of our chronic conditions we are forced to live with loneliness which has a negative impact on our health.

When will those in power ever learn?

Tell me…

Do you feel lonely? If so, in which way and what causes it do you think?

Do you ever feel the kind of loneliness described here?

What can we do to move out of this loneliness?

I’d love to know your thoughts!

Thank you so much for reading this post. If you know someone who could benefit from this, then please share this page with them. You are also more than welcome to share it in your Facebook or other patient support groups.

Did you miss?

My debut single is out! Salem: A song for the disbelieved

We aren’t invisible! We are made invisible.

Our tiny power as disabled people and why it matters more than ever

Meditation: Overcoming restlessness

Are you looking for all the meditations? Click here

Are you looking for all music? Click here

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My debut single is out! It’s called Salem and is for all of us who’ve been disbelieved

Salem is a song for all those out there who have been disbelieved, disrespected and mistreated for being sick. It’s been called “Heartachingly beautiful, raw, and profound.” And another listener wrote: “Your song Salem cracked something open in me — something that’s been waiting, aching, unheard…. This is more than a song. It's a testimony. It's protest. It’s sacred remembrance.”