Introducing The Next Generation Of Leaders And Thinkers

This Is Life With an Invisible Illness

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

In mid-October, just two months since the school year started, the girl began to fall 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 forced to stay home from school for a week by her parents, but this “flu” didn’t end in just a week.

The girl was exhausted, both mentally and physically. She began to have 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 with 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 recognized 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 trivialized 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 bed-bound; 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 Behavioral 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. It’s been over three years and 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. And that is happening, slowly but surely. More and more people know what this illness is thanks to the media beginning to talk about it. The movie ‘Unrest’, for example, caught media’s attention earlier this year. It documents patients life’s with M.E, created with Skype interviews and an iPhone camera, created in the confines of Jennifer Brea’s bedroom.

Comments are closed.

Related Posts