Out for a walk with the family.
In December 2021, I contracted Covid. The infection left me bedridden for weeks, but as it turned out, that was the easy part. In the years since the lingering symptoms have taken much more from me — my vocation, my financial security, and often, any sense of hope.
For the past six months, I’ve been producing a podcast to help others with Long Covid feel less alone. Loneliness, after all, is one of the worst aspects of this illness. There is so little understanding of Long Covid and what causes it that misunderstandings are rampant. They can leave you questioning not only your illness but also your sanity.
Since starting the podcast, I’ve been on the front line of comments about my illness — some well-meaning, others downright dismissive. Here are the top five comments I hear and why they’re so harmful.
“You look well”
I heard this only yesterday from a kind man who came to my door. He seemed genuinely surprised, as though he expected me to answer on my hands and knees before collapsing on the doorstep.
I get it. Chronic illness is often invisible. I might look fine on the outside, but inside, it feels like my body is falling apart. Chronic fatigue and mobility issues can be hidden, which is why people are often shocked to see me in a wheelchair.
While it’s meant as a compliment, telling someone they “look well” when they’re battling a chronic illness can feel dismissive. Instead, a better comment might be: “How are you feeling today?”
“It’s all in your head”
Once, someone told me a long story about how they overcame chronic pain by “just forgetting about it.” I was confused at first, but then I realised they were suggesting my illness was purely psychological — something I could overcome if I simply thought differently.
Mental illness is real, and of course, anyone living with Long Covid could experience depression or anxiety due to the daily grind of symptoms. I’m on antidepressants myself because of this illness. But please don’t suggest that my mental state explains everything. Long Covid’s physical symptoms are real and well-documented.
Comments like this leave me feeling ashamed for being ill, as though it’s my fault. A better way to approach the topic might be: “How is your mental health?”
“I also get tired”
A family member once said this to me after asking how I was. Their tone was assertive, almost dismissive, as if to say, “We all get tired, Get over it.” I was stunned and upset for days.
I’ve heard this countless times since, often from well-meaning people trying to relate. But sometimes, it feels like they’re minimising my experience. Chronic fatigue isn’t just tiredness. It’s as if every ounce of energy has been drained from me before I even begin my day. It’s like running a marathon in my sleep.
These comments only deepen my sense of isolation. A more supportive response might be: “Tell me more about how fatigue affects you.”
“It is just vaccine damage”
I read this regularly online. Strangers take the time to message or email me as though they’ve uncovered some grand revelation. “It’s vaccine damage!” they proclaim, expecting me to shout “Eureka!” in response.
The truth is, my Long Covid may be vaccine-related — I had two Covid injections before my illness began. Or it may not. My Long Covid started after contracting the virus itself, but either way, this comment isn’t helpful. Until research offers clarity or a cure, I’m focused on managing my symptoms as best I can.
I rarely respond to these messages because it’s clear that many people who believe this won’t be swayed.
“There is no such thing as Long Covid”
People with ME/CFS have endured this dismissal for decades, and now Long Covid sufferers are hearing the same. Some people go out of their way to tell me that my illness doesn’t exist. Others leave “laughing emojis” on my social media posts.
At the time, I shrug these comments off, but I’d be lying if I said they don’t get under my skin. When someone denies Long Covid’s existence, it feels like they’re erasing my experience. I don’t know why they think I use a wheelchair or spend hours asleep every day if this illness isn’t real.
For anyone with a chronic illness, these comments are devastating. Living with Long Covid is isolating enough. Why add to that burden?
Final Thoughts
Living with Long Covid is a daily battle — one made harder by the world’s misunderstandings. If someone you know is living with a chronic illness, choose empathy over assumptions. Instead of dismissing their experiences, ask thoughtful questions like:
• “How can I support you?”
• “What’s been the hardest part of your journey?”
A little understanding goes a long way.
Paul Clarke is the author of the book ‘Living with Long Covid’. After four years of Long Covid, he is on a mission to let others know they are not alone. Join the community using the button below to receive more posts, podcast episodes and more.
My extended family (which includes scientists and a literal virologist) tell me all the time that it’s the vaccines 🫠
A challenging article but one we should all read if we want to help those with long covid