- After years of being dismissed by doctors, Hayley Kinneavy, 29, was diagnosed with endometriosis, which left her with constant pain and exhaustion.
- She later developed chronic fatigue syndrome, fibromyalgia, and an unknown neurological condition, forcing her to rely on aids like a cane.
- Despite the challenges, Hayley found hope through her fiancé’s support, her dog Lenny, and her podcast Before You Bloom, which gives a voice to others living with chronic illnesses.
Here Hayley tells her own story in her own words.
Clutching my belly, I doubled over in agony.
It was that time of the month again.
Ever since my periods began when I was a teen, I’d been in excruciating pain.
My GP put me on the pill, which helped mask the symptoms.
But when I came off it at 23 in 2019 everything came crashing back — harder than ever.
I’d just started working in my dream job as a primary school teacher, but the intense abdominal pain which spread to my back and legs was unbearable.
‘You had a lot of internal damage’
Some days, even when I wasn’t on my period, I could barely walk.
Sick of GPs brushing me off, I saw a gynaecologist who arranged a laparoscopy.
Following the surgery the surgeon revealed I had deep infiltrating endometriosis.
‘You had a lot of internal damage,’ she told me. ‘It spread throughout your abdomen affecting your bladder, bowel, kidney and reproductive organs, with one of your ovaries fused to your uterus.
‘We cut away all the tissue that had stuck everything together.’
I was shocked but hoped the surgery would fix the issue.
However, when the anaesthetic wore off, I was in searing pain and recovery took several weeks.
Luckily, my partner Josh, 29, an occupational therapist, was incredibly supportive, doing all the housework so I could rest.
But it didn’t end there… My organs had been so badly affected, I was left with dysfunctions that caused severe constipation and bladder issues.
And the exhaustion never went away.
‘It feels like a blowtorch is burning my skin’
In October 2023, I was diagnosed with chronic fatigue syndrome (CFS) — a condition that affects the brain, muscles, immune system and more.
Some days I couldn’t get out of bed. In addition, following physical testing, my rheumatologist confirmed I also had fibromyalgia — a long-term illness that causes widespread pain, tremors, and crushing fatigue.
The pain was overwhelming.
‘It feels like a blowtorch is burning my skin,’ I sobbed to Josh.
Some days the burning sensation affected my hands or back, but when it flared on my scalp, it felt like every hair was on fire.
Migraines would keep me in a darkened room for days. I lost strength and even gripping a pen became difficult.
I tried everything — countless doctors, Chinese medicine, acupuncture — but what helped most was a hospital rehab program using occupational therapy, physiotherapy and hydrotherapy to improve my strength, mobility, coordination and balance.
Being stronger and more co-ordinated helped make physical tasks less painful, as did breaking down chores into steps.
To manage daily tasks, I started using an “aided knife” to help me cut up food without pressing down.
Still, more challenges came.
What is fibromyalgia?
Fibromyalgia is a chronic illness causing widespread pain.
Symptoms include difficulty falling (and staying) asleep, mood changes, anxiety, depression, fatigue and issues with memory and concentration.
The pain can be anywhere and everywhere in the body.
There is no cure but treatments include medication, exercises, relaxation techniques, heat or cold therapy and lifestyle changes.
I developed an unknown neurological condition that mimics multiple sclerosis, affecting my brain’s ability to communicate with my right leg.
At just 28, I began walking with a cane whenever I had a flare up. I also had to reduce my teaching hours from full-time to just three days a week.
Then in April this year came a bright spot. Josh proposed! Our three-year-old cavoodle Lenny wearing a bib that said, Will you marry my dad?
It was the easiest yes!
Now I’m undergoing fertility testing, hoping we’ll be able to have children one day.
Doctors still don’t know why I have these illnesses.
My mum Keely, 58, and sister Olivia, 26, are perfectly healthy.
It’s heartbreaking how misunderstood endometriosis still is.
People often dismiss it as just bad periods, but it’s a full-body disease that impacts every part of life.
There’s no cure for fibromyalgia either – just symptom management with medication, physio, and mental health support.
Living with multiple chronic conditions has shaped every aspect of my life.
But then I realised I wasn’t alone – and that’s what inspired me to speak out.
In my podcast , I launched in May 2023, I interview others facing visible and invisible health battles. It’s now in the top 2 per cent of podcasts and is listened to in 41 countries.
It’s a space to be seen, to be heard, and to share hope.
Because even when our bodies betray us, our voices can still bloom.
Find Hayley on Instagram @beforeyoubloom
