Living With a Disability is Exhausting
The Hardest Part Isn’t Always the Condition Itself
If you are a regular subscriber, then you will know that one of the main symptoms of Long Covid is exhaustion. Simple tasks like putting washing away or loading the dishwasher can wipe me out for hours. In addition to this, my capacity for multitasking is non-existent, and I can get easily overwhelmed.
What I have not been prepared for is the sheer exhaustion that has come as a result of being disabled.
To be disabled in the United Kingdom in 2025 with an illness that nobody understands feels like a daily battle to be heard and understood. Medical professionals, friends and family can all say nice things, but ultimately think it’s all probably in your head. This leads to feeling like a constant battle to be heard and seen.
I am also constantly battling the benefits system, which is not geared around helping me at all. The bar to gain any financial support is high, maybe even impossible for those with chronic conditions. I am constantly having reviews, being asked to fill in forms and treated with suspicion about my disability. Additionally, the government repeatedly promises to make it even more difficult and threatens to cut support off at any given moment. This makes my financial situation a constant worry.
Mobility aids are a blessing but also a curse. Gone are the days when I can nip to the shops or dash out to pick up a family member. Now I have to work out which mobility aid I will need, remember to take it and have my disability pass, radar toilet key and walking stick with me at all times, ready to go. When I reach my destination, I have to set up whatever mobility aid I have. I am often exhausted when I arrive at my destination, and any sense of joy has long since been taken away.
Social interaction is brilliant but utterly exhausting. An hour with family or a coffee with friends is the best thing ever, and I often leave those places buzzing. This is short-lived, though, as I always crash afterwards. My emotional and social systems feel like they have shut down, and I turn into a grumpy middle-aged man, confined to the sofa for the next few hours.
The daily grind is real. I have mentioned that simple household tasks can leave me chair-bound for hours. At those times, picking up something from the floor, reaching for my glasses, or going to the toilet can seem like monumental tasks for which I have to build up my energy. I constantly curse myself for leaving something in the next room because it feels like I have to pick up my own body and drag it behind me to get it. If family are around, they happily do it, but I feel like a child when I need help just to pick up a crisp packet from the floor.
I know this is a long list of negatives, and I have many blessings. After all, we are the lucky ones who survived the pandemic. However, just talking about this stuff can leave me feeling guilty and ungrateful, which, of course, is exhausting.
I never realised before Covid just how exhausting it is to be disabled, even before I consider my condition. I have only lived with this for a few years; I cannot imagine what it is like for those who have had it for life. I write this as a good moan, but also in the hope that others will be able to connect because the worst symptom of all this is feeling alone.
Know that, however you are feeling today, you are not alone. We see you and we are with you.
Paul