Our Story with ME/CFS: A Conversation Between Mum and Daughter
By Tina and Lottie Mincher

Before ME/CFS, my daughter Lottie’s life was full of the ordinary things that make being a teenager feel like being a teenager: school, plans, friends, and the freedom to imagine what might come next.

Then, after an infection, her life changed. There was no single moment when everything disappeared. Instead, little by little, things she had once taken for granted became difficult or impossible. School became harder to manage. Simply showering could take more energy than she had. Even everyday tasks could leave her feeling worse. 

As her mum, I have watched the world she could take part in become smaller. I have seen how much effort it takes her to get through a day, and how painful it is when people cannot see that effort. ME/CFS has changed Lottie’s entire life, and ours, but it has never taken away who she is.

What is ME/CFS?

ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) is a multi-system illness that systematically steals a person’s life. Medical research consistently ranks ME/CFS as having one of the absolute lowest quality-of-life scores of any chronic disease, often far lower than multiple sclerosis, heart failure, or late-stage cancers. It strips away a person’s independence, leaving them trapped in a body that cannot produce energy, plagued by constant pain, brain fog, and severe exhaustion. At its heart is post-exertional malaise (PEM): a cruel mechanism where even tiny amounts of physical, mental, or emotional effort trigger a devastating crash in symptoms. It is not a quiet fatigue, it is a total physical collapse that steals futures, isolates families, and leaves those affected fighting just to exist.

We wanted to tell our story together. I asked Lottie a few questions because her experience deserves to be heard in her own words. These are not answers for me to put into her mouth. They are space for Lottie to say what she wants people to know.

Lottie, What do you wish people understood about ME/CFS?

Lottie: I wish that people understood that the fatigue people with ME/CFS suffer with is not the same as regular tiredness. It cannot be fixed with a good night’s sleep. It lives deep in your bones and makes your body feel like a cage that you cannot escape, no matter how hard you try.

What is something people might not realise can be difficult? 

Lottie: There are so many things that people may not realise can be difficult, but I feel like the main thing is watching everyone else get on with their normal everyday lives while you’re forced to stay at home. And if you want to go and do something normal like going shopping or going to school, you constantly have to be vigilant on how your body feels. “Do I have enough energy for this?” or “Do I need to go home now?” means you can’t fully enjoy the experiences that you very rarely get to have.

What do you miss most from life before you became ill? 

Lottie: The thing that I miss most about life before I got ill is just going to school every day. I miss waking up at 7am, and wishing that I could have 5 minutes extra sleep, or just being able to see my friends every day, or just being in classes where I am so bored that I drew on my hand to pass the time. I miss it all.

What helps you feel supported? 

Lottie: What makes me feel supported is doing things that make me feel like I still have some part of my old self in my body. I love anything beauty and fashion. I always have. So every morning I will do my skincare and change into a different pair of pyjamas. Whenever we have to leave the house I will always dress myself nicely, do my makeup and hair and put on some jewellery. I know that not everyone with ME/CFS can do this, but this is just what makes me feel better.

What would you like to say to another young person living with ME/CFS? 

Lottie: I want to tell any other person with ME/CFS who may be reading this that there are answers out there and you will someday get to do all that you’ve dreamed of doing.♥️

I wish I could take this illness away from my daughter. I cannot. What I can do is listen, believe her, stand beside her and keep reminding her that she is more than what ME/CFS has taken from her.

And Lottie is more than her illness. She is still herself: with her own voice, feelings, hopes and future. Our lives may look different from what we imagined, but her worth has not changed. Her illness is real, even when it is invisible. Her voice matters, even when she cannot be out in the world.

We are sharing our story because no young person should have to feel alone or misunderstood in this. We hope that, by speaking together, another family might feel seen, and another young person might know that their life still matters, exactly as it is today.

“Invisible doesn’t mean imagined.”

– Tina