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I Am 18 and Chronically Ill. Yes, I Am Just as Valid.

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I was diagnosed with fibromyalgia just after I turned 18. I had been fighting for three years to be taken seriously, and it all came to a head in November 2020. I turned 18 and suddenly I had a diagnosis and a treatment plan. I’d been in and out of hospital and general practitioner (GP) offices. I’d had to quit school. I had been either on bed rest or basically sofa bound for the last four months, having only a few days where I could get out and about with my family and boyfriend. I was medicated for sleep, anxiety, pain and then, in late October, seizures.

I remember being told there was nothing that could be done for me when I was 17 and desperate to just have one year where I could be a normal teenager. I had just started going out with my boyfriend, I had a solid friendship group, I was doing well in all my classes and I was exercising enough. But I wanted a doctor to look past that and see the pain I was in underneath. I wanted them to see I was medicated 24/7 for headaches. I wanted them to see I could hardly eat properly because of a mix of anxiety, pain and medication. I wanted them to look past my age and give me the help I needed so I didn’t end up having to leave school and my friends behind.

I first became ill when I was 15. At the time, I was only diagnosed, after nine months of fighting, with myalgic encephalomyelitis (ME)/chronic fatigue syndrome, even though I was already starting to show symptoms of fibromyalgia. I was losing the years in my life where I was meant to go to parties and work and go on trips with my friends. Instead, I was spending them falling asleep reading, going from an A student to getting C’s and B’s and needing a week to recover after a day out. And still, the doctors kept telling me there was nothing they could do and I wasn’t “depressed enough” to get the therapy I desperately needed.

Young people are, too often, shoved to the side when it comes to chronic illness. There is often no care for us between the weird ages of about 14 and 18. And then there is the whole stigma of young people being ill. If I had a penny for how many times I heard, “But you look so young and healthy!” Or, “But you don’t look sick.” Or, “You’re too young, it’s probably just mental health or attention seeking,” I’d be a billionaire.

I am 18 and I live every day of my life with fibromyalgia, ME/chronic fatigue and functional neurological disorder. I have spent the last three years being shunted from one doctor to the next, most of them not actually thinking about my symptoms and what diagnosis would explain that.

It feels like I had to be an adult to be valid in the eyes of chronic health professionals. And that shouldn’t be the case. Many young people with chronic illness don’t get correctly diagnosed, and those who are often have to deal with not being taken seriously, or there being no outside support in schools and other institutions. If a person is sick, they are told to go to the doctor, but what do you do when the doctors don’t think you’re sick?

I now speak openly about my illnesses on social media. I get comments from doctors online telling me it’s all in my head, or I’m just seeking attention. And every day, I bounce back because I want other young people with chronic illness to know they are valid, to know someone believes them.

We may be young, but our struggles and our illnesses are just as valid as they would be if we were 10 years older.

You can follow Charlotte’s journey on Broken Books and Dreams.

Unsplash image by Carol Oliver

Originally published: April 3, 2021
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