The Loneliness No One Sees in Chronic Illness
One of the hardest parts of chronic illness isn’t the pain, the fatigue, or even the loss of the life you once had.
It’s the loneliness.
That loneliness can exist even when you have a close, loving family around you.
Unless you live with the same chronic illness, it is almost impossible to truly understand what someone else is going through. People can listen. They can care deeply and want to help. But they cannot feel it from the inside.
Even people with chronic illnesses can struggle to understand one another. There are similarities, of course, but no two bodies behave in exactly the same way. That’s especially true with long COVID, which seems to delight in being inconsistent, unpredictable, and deeply unhelpful.
Long COVID doesn’t arrive alone. It aggravates existing conditions, tangles symptoms together, and makes it almost impossible to distinguish where one ailment ends and another begins.
In my case, I already had an inflamed nerve in my back. The inflammation itself eventually settled, but the damage it left behind was amplified by long COVID. Add in extreme fatigue and brain fog, and I quickly realised that mobility aids were no longer optional.
Suddenly, life looked very different.
Long COVID creates a jumble of symptoms that are hard to untangle and even harder to explain to other people. Some days you can’t tell whether you’re exhausted because you moved too much, thought too hard, slept badly, or simply existed.
Rightly, people don’t understand what it’s like to walk in our shoes.
Most of the time, I don’t feel lonely. I’m fortunate. I have an understanding wife who listens, adapts, and walks alongside me as best she can.
But every so often, like in the few days after Christmas, the loneliness hits hard.
Because in that moment, I am alone.
Not emotionally abandoned. Not unloved. Just alone in a body that no one else can inhabit, interpret, or fully comprehend.
This isn’t written to seek sympathy. It’s written because if you’re reading this and feeling the same quiet isolation, I want you to know something important:
You are not alone in feeling alone.
That strange, aching loneliness is part of this life for many of us. Naming it doesn’t make us weaker. It makes us honest. And sometimes, honesty is the closest thing we get to company.
P.S. - I still have cold symptoms, which have persisted for the past two weeks. Or maybe it’s the fatigue. It's possible that my immune system is compromised. Or, perhaps just a cold. Here I go again……!
Happy New Year to everybody in our community. Podcasts will resume next week.
Paul
Life with Long Covid is more than a few articles; it is also:
A community which you can find at www.lifewithlongcovid.co.uk
A podcast which you can access through the website or through Apple and Spotify, just search for ‘Life with Long Covid’.
I have also produced a short book that details some of my podcasts in short, easily digestible chapters. You can read it when you have the energy. It’s available on Amazon here.
Sales of the book help me with the cost of the podcast and website. You can subscribe to receive the latest articles and episodes in your email inbox. This is free, but there is also the option to pay monthly or annually to receive it. To the people who feel able to support me financially, I am very grateful to you.