Living With Chronic Illness: Overcoming My Own Stigma
When ME CFS was first mentioned to me, it wasn’t even in a dramatic or definitive way. It was more of a quiet suggestion, almost a passing comment, like something to tuck away for later. At the time, I didn’t really know what it meant. I knew the words, but I didn’t understand the weight they carried. I went away and did what I always do when something doesn’t sit right in my head. I researched. I read. I joined a few foreign Facebook groups and forums. I listened to people who were living it, not just textbook definitions or short NHS blurbs. And the more I read, the more it all made sense. My symptoms. My limits. My body is doing things I couldn’t explain or control. It was like someone had finally handed me a map to a place I had already been lost in for a long time.
But alongside that clarity came something else. Fear. A deep, sinking fear that had nothing to do with the illness itself and everything to do with how it is seen. The stigma attached to ME CFS genuinely horrified me. Story after story spoke about people going to A&E in real pain, only to be dismissed the moment they mentioned ME. Pain written off as part of the condition. Symptoms brushed aside. People were made to feel like they were exaggerating or wasting time. I read about people going to their GP and not being taken seriously. Being told there was nothing that could be done. No treatment. No support. No referrals. Just a shrug and a suggestion to rest more, as if rest alone could fix a nervous system that felt permanently on edge.
What frightened me most was the idea of being officially diagnosed and then not believed ever again. The idea that having a name for what I was experiencing could actually make things worse in medical settings. That once the label was there, everything else would be filtered through it. That any new pain or symptom would be blamed on ME without investigation. That terrified me. It made me not want the diagnosis, even though deep down I knew it was coming. I knew my body well enough by then to understand that this wasn’t going to just disappear.
So when my GP appointment came around, I went in braced. I was ready to advocate for myself. Ready to argue if I had to. Ready to leave feeling deflated. Instead, I was met with something entirely different. My GP was kind. Truly kind. She listened. She believed me. She didn’t rush me or dismiss my concerns. And then she told me that in my area, there is an ME clinic. That there is a pathway. That there is support. I remember the physical feeling of relief in my chest when she said that. Like I could finally breathe properly again.
That appointment shifted something in me. It made me realise just how much of a postcode lottery the NHS really is. I am painfully aware of how lucky I am to live where I do. Here, ME CFS is taken seriously. It is not treated as a dirty word or an inconvenience. There are professionals who understand it, or at least respect it enough to keep learning. I don’t take that for granted for a second, especially after seeing the experiences of so many others around the world who are not afforded the same care or compassion.
Even with that reassurance, I noticed something in myself after the diagnosis. Not embarrassment. Not shame. But a tentativeness. A hesitation. When mentioning to health professionals that I have ME CFS, I sometimes find myself saying it quickly, almost under my breath, and then holding it there in the air between us. Waiting. Holding my breath for the reaction. Bracing for the dismissal I had read so much about. It is strange how other people’s experiences can lodge themselves inside you like that, even when your own reality has been kinder.
And yet, every single time so far, I have been met with understanding. Doctors have acknowledged it without question. Specialists have shown compassion. Even my optician listened carefully and reassured me. No eye rolling. No sighing. No subtle suggestion that it is all in my head. Just calm, respectful acceptance. That still surprises me, and maybe that says more about the state of things globally than it does about my local care.
I am acutely aware that my experience is not universal. I see the pain every day in those groups I joined. The frustration. The grief. The anger of people who are not believed, who are gaslit by the very systems meant to help them. The stigma that follows them into every appointment, every hospital visit, every attempt to seek support. It is heartbreaking. And it makes me feel both grateful and sad at the same time. Grateful for the care I have received. Sad that it is not the standard everywhere.
ME CFS is hard enough on its own. The physical limitations. The unpredictability. The loss of the life you thought you would have. Adding disbelief and stigma on top of that is cruel. No one should have to fight to be taken seriously while already exhausted just from existing. My hope is that by talking about my experience, by being honest about both the fear and the relief, I can add another voice to the conversation. One that acknowledges the reality of the stigma while also showing that compassionate care is possible. Because it is. I am living proof of that.
About me
I am a married mother of four children. One of those children is our granddaughter, for whom we are legal guardians and kinship carers. I run a small business, and I love to write, which is how this blog came to be. I write about family life, kinship care, and my experiences living with chronic illness and disability, including ME CFS, spinal stenosis, chronic pain, and fibromyalgia. I am also very aware that I am doing all of this in my mid-forties, which still surprises me some days.
