Unpredictable, invisible illnesses are hard to live with and explain.
"But you looked OK this morning," "You are lucky having lie-ins," "I know, I’m tired too!"
I had just turned 12. It was New Year's Eve and out of nowhere, I was hit with the worst flu imaginable. Six weeks later, I was diagnosed with an autoimmune disease (Undifferentiated Connective Tissue Disease/Lupus) full of chronic fatigue, severe muscle and joint pain, and brain fog. As a result, my school attendance plummeted. Months passed, flat in bed and social isolation followed, made 100x worse by the school dismissing the diagnosis in real terms: no reduced timetable without a fight, zero compassion, and letters sent threatening my parents for failure to get me into school. CF needs flexibility, and unfortunately, the school was unwilling to flex to support me. My consultant was flabbergasted – despite blood tests showing autoimmune activity, Occupational Therapy and Physiotherapy reports and clear evidence of a life derailed, the school pastoral system completely failed me. Being disbelieved by an adult has major consequences.
The UCL Hospital has since provided me with Psychotherapy to help address not only the loss that comes with CF but also the damage of being a child and the trauma suffered by being disbelieved by adults in authority at school. I had been a swimmer, and swum weekly, been in the school netball team and cycled everywhere with my family, but this all went overnight along with my self-esteem. School should have been a safe place where I was championed, instead, they were more concerned about my potential dent in their ‘data set,’ as they called it. The school failure placed enormous pressure on my parents, and they bore the brunt of the stress.
Add Covid to the mix - I was very vulnerable - so my parents decided to teach me my GCSEs at home with patchy work provided by the school. It was at this point that we reached out to Fresh Start! For two years, (through years 10 and 11,) I met my Education Specialist online for Maths and Science. She was so much more than just a tutor – she was kind, upbeat, believed in me, supported me emotionally and made learning fun. She encouraged my parents with all they were juggling too. Despite school and the burden of a chronic illness I passed my GCSEs and moved on to college to complete my Level 3 Art and Design, and I started Foundation of Art in September.
The college has been amazing, providing me with a lift pass, and a totally flexible timetable that I choose daily, and they help me advocate for myself. I have some lovely friends and have worked hard, with hospital guidance and support, to get to a place where I am more physically stable. But the emotional toll of chronic fatigue is huge. Unpredictable, invisible illnesses are hard to live with and explain. "But you looked OK this morning", "You are lucky having lie-ins", "I know, I’m tired too!"
I produced my final art piece on this issue - the painting, seen below, is huge in real life and the explanation for it follows - I hope it helps explain CF better.
‘‘It ain’t no bed of roses."
This is a visual representation of how I feel invisible illnesses are viewed. The figure lying on the bed may have been there for days; trying to manage chronic fatigue and ordinary life is a daily struggle.
Lying on a bed of roses means there are thorns. These thorns to me are the combination of medical data proving that I have an illness which I would rather be without, as well as the school data revealing that teachers in the past have not believed me. The same flowers encompass both the proof of my illness and the emails claiming it is all made up. I would dearly love to be lying on a bed with no data.
My Top Tips for Education Specialists and Teachers:
- Listen and believe the student; fatigue can flair up after stressful situations, lack of sleep, too much sleep, certain foods, and illness. Patterns are hard to spot for many
- Encourage the student to pace themselves, and reserve energy for non-work things, where possible
- Remind them how amazing they are!
- Advocate for them if they need you to
- Remind them that school is a very intense time and life is better afterwards! There are more ways to ‘do’ life
- Make learning relaxed. Stress and exams always make autoimmune disease and CF worse
- Be flexible
- Understand their symptoms. For example, my wrist hurts a lot, and it affects what I can do. Brain fog affects confidence too. This is a big deal for young people. When it occurs, it makes me feel stupid and I trip over my words to a point where my brain actually hurts!
- Pace the work, make it fun and be the adult!
Netta is a former Fresh Start in Education student, who successfully completed her GCSEs and is currently studying Foundation of Art.
*all artwork in this blog has been created by Netta and shared with her permission.