ADHD, advocacy, and finally being heard
Author’s Note: In this chapter, I begin reclaiming what was always mine: autonomy, understanding, and the right to be treated with care. Sharing this part of the journey is vulnerable, but it’s also a testament to resilience. If you’re advocating for your own health or trying to make sense of a new diagnosis—this is for you.
⚠️ Trigger Warning: This section includes references to postnatal depression, pregnancy complications, NICU experiences, and worsening chronic illness. Please take care as you read.
A Glimpse of Hope
Eventually, I saw a gynaecology consultant who actually listened. He ordered an MRI, and in early 2024, I received a letter suggesting a diagnosis I’d never heard of: adenomyosis.
I turned to Google and cried.
“Adenomyosis is a condition where the lining of the womb begins growing into the muscle in the wall of the womb.” NHS England
Suddenly, everything made sense: the pain, bleeding, fatigue, and emotional toll. But the letter listed treatments I’d already tried. It stated that my previous C-sections had caused adhesions—making surgery risky. Again, the message was: You might just have to live with it until menopause.
I felt devastated. Unheard. Again.
My Zoladex injections—placing me in chemical menopause—were due for review in March. But the appointment was cancelled. Nothing was available until September. Formal complaints were the only way to get clarity.
The ADHD Revelation
In May 2023, I was admitted to hospital with neurological symptoms—numbness and weakness in my arms and legs. After ruling out Guillain-Barré and MS, a neurologist asked:
“Has anyone ever considered ADHD?”
She suspected my brain had shut down under stress—paralysis as a survival response. Everything shifted.
After weeks of stalled referrals, I went private. In June 2023, I received an ADHD diagnosis. For the first time, my life finally made sense. Treatment was life-changing—but expensive. I asked my GP for shared care. They refused, saying I had “managed without it so far.” They even declined to monitor my high blood pressure; despite knowing I was on medication.
Another wall. Another version of: You’re fine. Just cope.
A Quiet Shift
By late 2023, something inside me shifted—a quiet call to reclaim my life on my own terms. I enrolled with The Open University in October. It was something just for me, and studying brought purpose, structure, and the start of a new rhythm. In March 2024, my neurologist formally prescribed ADHD medication. I could focus. I could breathe. That summer, I finished my first year with distinction —proof of just how far I’d come.
But progress wasn’t smooth. In November, my consultant said my GP had to take over prescriptions. Shared care had already been refused three times. She promised one final prescription—but it never came. I chased, received silence, and went private again. It wasn’t cheap, but I couldn’t let go of something that finally helped.
The Moment I Was Heard
In April 2024, I arrived at the gynaecologist’s office bracing for a battle. I had a ring binder packed with medical notes and scan results, expecting to have to prove myself—again. But as soon as I sat down, the consultant looked at me and said, without hesitation, “You need a hysterectomy.” No resistance. No dismissal. Just clarity and care. She added me to the waiting list and encouraged weight loss to reduce surgical risks.
The car ride home felt surreal. I couldn’t speak. I couldn’t think clearly. It was as though the appointment had been a dream. I’d spent years being questioned, disbelieved, dismissed—so having a doctor agree with me so immediately didn’t feel real. I was in shock.
That moment of being heard gave me the push I needed. I started at 24 stone and committed to loosing weight with quiet, determined focus.
Later that year, I joined an online coven—drawn by a deep need for connection, community, and spiritual grounding. It quickly became a space where I felt seen and held.
Hope on Hold
By early 2025, I’d lost 10 stone and was ready—physically and emotionally—for surgery. |
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But it wasn’t simple. My original consultant wasn’t available. A specialist bed was needed. By March, I had a date: 14 May.
April’s pre-op appointment felt hopeful. The anaesthetist was optimistic. Keyhole surgery seemed possible. But that evening, I was given a sudden appointment at the pelvic mass clinic. My surgery had been cancelled.
A few days later, I met with the consultant who—despite agreeing to operate a year prior when I weighed significantly more—seemed hesitant to proceed. Eventually, they agreed.
I had a date set: 4th June for the hysterectomy I had fought so hard to receive. The months leading up to it were a mix of emotional preparation and quiet determination.
