Still Here to Tell the Tale: My Journey Through Illness, Loss, and Purpose

By Jacqueline Hewitt-Main, OBE

Four years ago, I had to step away from the work I loved — not by choice, but because of chronic illness. I retired, reluctantly, and began a journey I never expected. On February 22, I moved into my son’s home after leaving rehab. What followed was a year and a half of community care: social workers, charities offering befriending services, and people who came to sit with me or take me out for an hour. I was receiving one-to-one therapy, group therapy, speech therapy — all while battling my body.

That first year, I had four bouts of pneumonia and seven chest infections. By 2023, I was undergoing endless tests — bloods, scans, X-rays — trying to find answers.

One doctor even asked if I worked for the hospital, stunned by how many investigations I’d had in just six months. The Long Covid clinic became a lifeline. My specialist nurse listened as I tried to process the layers of illness and loss. I lost all my hair — a shock that felt like losing part of myself. But this wasn’t new. I’d been diagnosed with Sjögren’s syndrome back in 2011, and POTS in 2013 by a private doctor. I managed. I coped. But after Covid, everything became harder. I was navigating Job Centre assessments, PIP forms, and calls from mentors asking if I could return to work. I couldn’t. Walking became difficult. Moving from chair to bed was a struggle. By 2024, I was formally diagnosed with POTS again, and placed under a rheumatologist who saw the
truth: decades of trauma from being neurodivergent and unsupported.

She recognised what others had missed — the burnout from undiagnosed ADHD, the chronic fatigue, the boutique syndrome I’d lived with since my 20s, when I had to leave my army house after divorce and return to Essex. She saw how 40 years of being misunderstood had shaped my health, my resilience, and my fight. “I’ve lost mobility, energy, even my hair — but never my purpose. I’m still standing, even when seated.”

Last year, I couldn’t even reach down without dizziness. Housework was impossible. So we redesigned the kitchen — built around me — to give me some independence while my son worked. That small act sparked something: a purpose project. After the builder left, I picked up a paintbrush. It took me 16 months to finish, because fibromyalgia would knock me down for weeks. But I kept going. It gave me a reason to get up.

In 2025, I was diagnosed with widespread arthritis. Walking a few steps became a challenge. I now use a crutch indoors, a walker for short trips, and a wheelchair when I go out with Richard and the children. Processing that reality has been brutal. I used to drive thousands of miles a week, helping others. Now I sit. And I grieve that shift.

But I’m still here.

This year, I’ve returned to hospital for therapy to strengthen my muscles. I’ve been diagnosed with sleep apnoea and placed on a machine that’s helping. Every day is hard. But I’ve never given up.
I’m learning to care for myself in new ways. As an autistic woman, I lived on a beige diet — counting foods, avoiding textures. Now I’m trying bone broth, protein, eggs — anything to rebuild. I can’t leap into projects anymore. But I can sit, read, and learn.

This journey has been long, painful, and humbling. But I’m still here to tell the tale.

And everything I’ve learned, I’m sharing — because someone else might need it too.

“This isn’t the end of my story — it’s a new chapter, written from a different seat, but with the same fire.”