Life With an Invisible Illness

Let me tell you about a 12-year-old girl just starting secondary school in the UK. She was happy, healthy, making friends, and doing well in her first few weeks of early mornings and homework.

That was until mid-October, just two months since the school year started, when this girl fell ill with what she assumed was simply the flu. It was “flu season,” after all, and she had never had the best immune system.

She was made to have a week off from school, like any worried and capable parent would do if their child was sick, but this “flu” didn’t end in just a week.

The girl was exhausted, both mentally and physically, as well as being susceptible to countless migraines, joint pain, sore throats, not being able to concentrate, insomnia, irritability and aches, just to name a few symptoms of this “flu.”

As the weeks went on, the girl began to experience anxiety and depression. She was so fed up of feeling so ill and there was nothing working to help what was quickly becoming her life.

Her doctor didn’t believe her, explaining that it “was just puberty” and “it’s anxiety,” as well as teenage laziness. They referred her to CAMHS (Child and Adolescent Mental Health Services), who diagnosed her with social anxiety and made her have a mental health assessment, as she was showing symptoms that related to other mental illnesses.

This battle with doctors went on for almost two years, until she ended up with a different GP who recognised the symptoms as something called Myalgic Encephalomyelitis—ME for short. This was also known as Chronic Fatigue Syndrome, but the girl didn’t like that name as she felt as if it just sounded like she was tired all the time, or exhausted, at best. It trivialised the other symptoms.

Her new GP told her that it was essentially an "invisible illness," as it had no telling symptoms and had little known about it due to only basic research into what causes it or even what it was.

The chronic illness (some would call it a disability, and rightfully so) has 60+ symptoms that could be experienced and ranged from mild to severe, where people were housebound or bedbound; or even stuck in a hospital, being tube-fed or needing oxygen masks to help breathe. There is no cure, and the "cures" and treatments that are being developed are harmful at best.

These treatments include graded exercise therapy, which was proven to cause even more exhaustion, and patients who tried it ended up pushing themselves too far. Another “treatment” was C.B.T, or “Cognitive Behavioural Therapy," but many feel as if it just helps you deal with being ill and not helping you feel better. Doctors who do believe in it and do treat it treat the symptoms rather than the illness itself.

That girl is me, and I am over three years on since the start of this article. I still have this illness. I had to quit school and be home educated because I was in school so little. I’m glad that I am well enough to educate people though, as a lot of people who suffer from this cannot. We don’t want sympathy, we just want people to know what this is.

That's beginning to happen, too. With campaigns such as #millionsmissing, when sufferers and non-sufferers alike take part in a global protest for ME/CFS health equality, the next protest being on the 12th May, 2018. More awareness is spreading with the creation documentaries such asUnrest by Jennifer Brea, a virtual journey to document her story as she fights a disease that medicine forgot. It was shortlisted for an Academy Award this year, yet unfortunately did not receive one of the final nominations.