By Allayne L. Webster.
Living with chronic illness, no matter the form, is a tough slog. In recent years the medical profession has adapted a more holistic approach, the focus shifted from treating not only the affliction, but also the resulting stress and anxiety.
Go back forty years however and it was a different story.
Allayne L. Webster is an internationally published children’s and young adult author.
(Credit: Supplied)This is the time when I grew up. Back then, the focus was purely on treating my condition: chronic atopic eczema and severe life-threatening allergies.
Mental health wasn’t mentioned. Counselling services were for war veterans or survivors of abuse. It wasn’t offered to a child suffering from a chronic condition – certainly not to a child like me.
I’ve lived with severe allergies and eczema from the age of five. My childhood was a constant merry-go-round of doctors and specialists, tests and medication.
My family lived in a rural area and a specialist appointment meant a four hour drive to the city, school absence, juggling care for siblings, swapping work shifts, overnight accommodation … It didn’t just mean a gap fee or a pharmacy visit.
Chalk up mental health issue number one: guilt.
I felt the weight of my condition and its impact on those around me. I threw people into chaos. Not just family and friends, but strangers. Doctor’s receptionists who had to find space in overloaded diaries. Caterers who had to adjust menus to find me something safe to eat. Teachers who had to change assessment to fit around my absence.
Children have an awareness about adults who are struggling to be accommodating, and they’re completely and utterly powerless in the equation.
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Picture me age twelve, alone, naked in front of my bedroom mirror, my body covered in red, itchy welts. What goes through my mind? I’ll tell you:
Why am I not like my friends? Why can’t I stop itching? What’s causing this? Was it the chocolate I ate yesterday? I’m so ugly! I’m disgusting, a failure, I hate myself. No one is ever going to love or marry me. I ruin photographs. I ruin my clothes and bedsheets with bloodstains. I can’t wear short-shorts like other girls.. Mum is sick of washing. Dad’s cross as he had to spend more money on medicine. I’ve let my family down. Why don’t I look like the girls in magazines? I have to work harder at hiding this. I have to cover up. It’s summer. How do I cover up? What if that nasty boy in class sees this and teases me? Now I’m itching because I’m upset. I’m so useless!
Unpick that. Some statements are internalised, some are about others, some are externalised. All of these worries drive a sufferer to the brink.
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Allayne L. Webster’s new middle reader fiction novel Sensitive is largely autobiographical, based on Allayne’s personal battle with chronic illness, severe life-threatening allergies/intolerances and chronic atopic eczema.
(Credit: UQP)One of my most vivid memories is reading Deenie by American author Judy Blume.
A sub-character, Barbara, was nicknamed ‘The Creeping Crud,’ and was teased for having eczema. It was the first and only time I saw myself represented on the page, and it was a life-changing revelation. That’s when I realised how a story can create empathy and educate others.
So I wrote Sensitive for kids like me. Kids who suffer but who also worry themselves sick.
I carry my childhood, as I carry my adult years of dealing with chronic illness. The only true comfort I’ve found is in knowing I’m not alone.
I hope Sensitive breeds empathy, understanding and compassion in a new generation of kids.
Allayne L. Webster is an internationally published children’s and young adult author. She’s the proud recipient of three arts grants, has been shortlisted for various literary awards, and has had two Notable Books in the CBCA Awards.
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