I’m Lizzy, I am 17 years old, I live in the UK and I am chronically ill.
I am diagnosed with Depression, Anxiety, OCD and Chronic Fatigue Syndrome,
and am awaiting a diagnosis of Asperger’s Syndrome and, as of 13th March 2017, I am also diagnosed with autism.
I had to quit sixth form in February 2016 due to my worsening fatigue and depression, and currently I am not in education or work of any kind. My friends abandoned me after I became ill, so I rarely see anyone who isn’t a doctor or in my immediate family.
I am asexual and aromantic, and I have recently realised (after years of confusion about my gender) that I am a demigirl. This means that I identify as partly but not fully female, meaning I use she/her pronouns, but dislike being referred to as a girl. I dress in an androgynous style, with a mix of male and female clothes. I am very uncomfortable with my body looking obviously female – I have a particular hatred for my chest, and would have chest surgery if I could. The following can all be used to describe my gender and sexual orientation: asexual, aromantic, genderqueer, non-binary, demigirl, androgynous and queer.
In November 2016, I had a review for my Personal Independence Payment, which the Department of Work and Pensions decided to cut – despite the fact that I was worse than I had been when I got my original award in July 2015. Since January 2017, I have been trying to make a new claim, which should hopefully be more successful.
Chronic Fatigue Syndrome has many more symptoms than the name suggests. These are the current symptoms I get as a result of my CFS:
- Fatigue that doesn’t get better with sleep or rest, and makes me feel like I constantly have the flu.
- Persistent muscle and joint aches and pains.
- Post Exertional Malaise – this is the proper name for what happens to people with CFS after we exert ourselves. It means the fatigue doesn’t hit you until a few hours or even a few days after the activity.
- Poor balance.
- Digestive system problems similar to Irritable Bowel Syndrome.
- Poor sleep that doesn’t refresh me – I wake up feeling as though I haven’t slept.
- Painful glands in my jaw and neck.
- My CFS also affects my ability to walk (my muscles are weak and my poor balance means I fall over a lot), which means I can only walk with two crutches, and have to use a wheelchair whenever I am outside of the house. I tried using an electric wheelchair, but I kept crashing it, so I use a manual wheelchair that someone else pushes for me.