Hannah Gilmour

Hannah - One viral infection too many led to the loss of my teenage years

About ten years ago, my life changed completely.

I started getting constant viral infections and chronic migraines, and before I knew it, I was sleeping through the entire school summer holidays. Eventually, I was diagnosed with M.E.

It’s hard to put into words how much I’ve missed out on—things most girls just take for granted growing up. Before M.E., I was active, I had close friends, and I’d just started my second year of high school. I was excited about the future and dreaming of a career working with animals. I loved ice-skating, going to the cinema, and bowling with my friends.

Then everything stopped.

One of the hardest parts has been the stigma. People don’t understand what it’s like to have a chronic illness at such a young age, and a lot of them don’t even believe it’s real. They’ll say it’s depression or anxiety, or that I’m just tired. But no 12-year-old chooses to sleep 18 hours a day, miss school, lose friends, and give up hobbies and holidays.

M.E. is exhausting in every way. It’s not just the fatigue—it’s planning my entire life around appointments, pacing my energy so I don’t crash, and dealing with post-exertional malaise (PEM), which basically means my symptoms get worse—or new ones appear—if I push myself physically or mentally.

On top of the extreme tiredness, I have trouble regulating my body temperature, I’m sensitive to light and sound, I get a racing heart, shortness of breath, brain fog, and unrefreshing sleep.

Most days, I don’t leave my bedroom. On a good day, I might be able to get out for a few hours to see friends or family, or go to an appointment—but then I usually need days to recover. On bad days, I can’t get out of bed at all, and the exhaustion and pain are overwhelming.

I’ve had to figure out my own ways of coping. Drawing and building Lego are my escapes—they give me a break from thinking about my illness.

Since I was 12, I haven’t been able to be in school or work. I tried home tuition, and later a college class to get my maths and English qualifications, but I had to stop because my health couldn’t cope. Now, I make sure to schedule plenty of rest throughout the day, because without regular breaks, my symptoms spiral out of control.

Hope 4 ME and Fibro NI have been such a lifeline for my mum and me. They’ve helped us learn more about M.E. and supported us while we’ve dealt with doctors, therapists, the Education Authority, and even Social Services.

I just wish doctors and the government would take M.E. more seriously—especially in young people, but really for everyone who has it. It’s horrible being told you’re lazy or faking it when you’re too exhausted and foggy to even process the conversation.

Schools and workplaces need to be better informed too. If they understood M.E., they’d know why someone might need a few days off, and people wouldn’t have to feel guilty or judged for taking the time they need.

If you or someone you know is suffering from or needs more information on Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) Contact us