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"But you don't look sick!"

Fifteen-year-old Ali has recently joined Cambridge Children's Press Pack, using the platform to raise awareness of the issues that matter to him. For Invisible Disabilities Week, he has written about the huge challenges facing young people with hidden conditions.

an image showing Ali's hidden illnesses

I suffer from chronic conditions: CFS (Chronic Fatigue Syndrome), EDS (Ehlers Danlos Syndrome), hypothyroidism and Hashimoto's disease. Every day is a challenge which I have to battle whether it be with my mental or physical health. The hardest part of living with a chronic condition that I face is school. I repeatedly have to justify to teachers why I can’t attend all my lessons or I’m late with homework or I can’t complete an assignment. Then there are the oblivious pupils who ask all types of uncomfortable questions. I can hear them whispering and gossiping about me, but I just have to continue with my day and not let it get to me. I constantly remind myself that I'm not the only one.

Any medical illness that is not readily apparent to others, including healthcare experts, is referred to as an 'invisible illness'. An invisible condition might make it difficult for a person to go about their daily activities as they typically would. People with invisible illnesses frequently have limited power and must be extremely careful in determining what to expend their energy on, even on days when that are not accompanied by pain and chronic exhaustion. You must overcome numerous challenging obstacles. One of the biggest challenges which people battle regularly is the common misconceptions that arise because of other people's observations. You must deal with the added stress caused by others who do not acknowledge you are unwell because they do not believe you 'look sick', including family, friends, co-workers, teachers, and even medical professionals. Frequently, those close to you do not take your illness seriously or even remember that you have it.

Things you hear, repeatedly:

  • “Are you still ill?”
  • “Are you going to get better soon?”
  • “You don't look sick.”
  • “You’re simply lazy.”
  • “Everyone gets fatigued.”
  • “Just deal with the pain.”
  • “You just want attention.”

It can be difficult to explain or educate people about invisible conditions. You experience a variety of mental health challenges because of feeling invisible, including dejection, ongoing outrage, pervasive discontentment, anger, melancholy, substance misuse, and hopelessness.

I cannot emphasise enough how crucial it is to spread awareness of invisible illnesses. Society as a collective must gather to comprehend the struggles of others and learn to respect and understand them. By doing this we can prevent a series of mental health issues and self-harm, and even save lives.

A photo of Ali
Ali, age 15, is a member of Cambridge Children's Press Pack 2022-23