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I Am Not My Condition: Acromegaly and Me

Reading time | 3 mins

When the doctor diagnosed me with acromegaly, it came as a huge shock.

Acromegaly is a rare condition, where the pituitary gland produces an excess of growth hormone. Too much of this hormone in your body can cause a slow, but steady change of appearance. Your shoe size may get bigger, or rings may not fit on your fingers anymore. You could also feel excessively tired and develop muscle weakness.

When I received my diagnosis, my body's growth hormone had been running rampant for almost 10 years. I was in and out of my GP's office, feeling like I was making up all my symptoms. I thought I was going mad.

My GP reassured me time and time again that everything was okay. Little did he know that I had a tumour causing havoc behind the bridge of my nose.

I thought a change of scenery would help

I trusted my GP's opinion, so I decided that a change of scenery would make me feel better. Aged just 23, I headed to the airport and bought myself a one-way ticket to Australia.

Of course, a "change of scenery" wasn't the answer. A year into my new life, I became so unwell I had to return home.

Two months after stepping through the doorway, I had an acromegaly diagnosis and a giant macroadenoma.

Oddly, though I was shocked by this diagnosis, some of my friends and family were not.

Gradual changes

It's much harder to notice any changes when you look in the mirror every morning. The changes are gradual, not overnight, so your mind compensates for what the eyes see.

The people who hadn't seen me in a while, on the other hand, noticed the physical changes immediately.

At first, I thought my symptoms would have an easy fix. "Give me a pill," I remember thinking, "and I'll be right as rain."

My first meeting with a local endocrinologist dashed those hopes.

I was scared… but I had strength

The resulting acromegaly treatment was the most demanding experience of my life. I had three brain operations in three months, swiftly followed by radiotherapy.

I remember the fear weighing in my chest when I went to meet a consultant endocrinologist. As I sat in King's College Hospital, daymares of what lay ahead threatened to take over.

When I left, I was still scared, but an immense feeling of strength settled on my shoulders.

I thought to myself: "Come on, you can do this."

No matter what was to come, I wasn't going to let it beat me.

Acromegaly hasn’t beaten me

Five years on, acromegaly hasn't beaten me, but it hasn't been a walk in the park.

I had two craniotomy operations to remove the tumour, leaving me blind in my right eye. Unfortunately, the tumour was so large it had got wrapped around an optic nerve.

I've also had to learn to live with fatigue and avoid overexerting myself, as it makes me feel worse.

My superficial symptoms haven't reverted to the way they were pre-tumour, so my hands and feet are still large. It's almost impossible to find rings that fit or shoes that encase my feet.

In better news, the lingering headaches have vanished, giving me a new lease of life. I've also adapted to only having sight in my left eye, and I returned to my hairdressing work two years after treatment. I can even renew my driving licence!

Right now, I'm at university studying to be a nurse. The kindness and compassion I received in treatment inspired me to give more of the same. Helping people makes me so happy.

We are not our conditions

I remind myself every day that I am not my acromegaly. I'm my own person, with hopes and dreams for the future.

I've spent so long in hospital discussing and re-discussing my condition, I used to feel like I've forgotten who I am.

It's taken practice, but I no longer let it consume me. If you've got acromegaly or another condition, don't forget to make time for what you enjoy. We need to remember who we are.  

NPS-IE-NP-00226 May 2021