“I beat my diabetes shame”

Are you ashamed of your diabetes? Afraid of judgement, Ilene Raymond Rush kept hers a secret for years, before deciding to accept her diagnosis and take control of the shame game

HIDING DIABETES

It’s early March in 1985 and I’m in a hospital bathroom. My father is about to undergo a heart bypass; I’m huddled beside a sink, fighting to squeeze out a drop of blood for my new glucose monitor. But the more I try to extract the blood, the less cooperative my finger becomes. I’m scared of the lancet, scared of getting a reading above 8.3mmol/L. I hate the sight of my own blood. And what if one of my sisters wanders in on me midtest?

The truth is I’ve kept my condition a secret. I’m terrified of being forced to reveal it. Awaiting the verdict of the machine, I’m also swept with shame. Ever since my doctor told me I have gestational diabetes, I feel I’ve done something wrong to hurt my unborn child.

A LEGACY OF DIABETES

Diabetes was always a loaded topic in my family. My father – who was diagnosed with type 2 at age 30 after passing out at a party – never accepted his disease. He never followed a food plan or regularly exercised. That he lived until 89 was a testament to his many years of physical labour at his hardware store.

My father’s attitude drove my mother crazy. She’d beg him to see an endocrinologist and to change his diet. Despite her anxieties, he resisted. I suspect he saw diabetes as a sign of personal weakness, and to deny or ignore it was to never give in.

Ignoring his diabetes had clear repercussions. My family and I had witnessed them – when my father might suddenly go pale, start to sweat and come close to passing out from low or high blood sugar. Once he pulled over and passed out in his car. What saved him, I’ll never know. So, when I discovered, while at university, that I had prediabetes, I had my model.

Despite my diagnosis, I continued to eat ice cream, pizzas and chocolate chip biscuits. After graduating, I went every few months for check-ups, and my HbA1c levels were always in the normal range. But glucose tolerance tests showed another story – they reached 16.6mmol/L and above. Diabetes had not vanished, it was waiting to jump.

And jump it did. Six months into my first pregnancy, I developed gestational diabetes. How was it going to affect my baby? And how could I tell my parents? Diabetes was a weakness and a shameful legacy. But I

wasn’t my father. Because of my baby, I had no room for denial.

I took control. This meant sometimes four hours of exercise a day. If my sugar rose a few points, I biked it down; if I ate an extra slice of bread, I made for the local pool, where I swam endless laps. The glucose monitor was my new companion. I stuck to my extreme exercise plan until the day before I was induced. The result? A healthy 3.8kg son – and two proud grandparents who never knew my secret.

ACCEPTANCE AND ACTION

Seven years later, in my second pregnancy, my endocrinologist insisted I take insulin. My doctor kept careful track of my sugars, and although the pregnancy was again high-risk, I had a second healthy baby boy.

Afterwards, I thought I was through with diabetes. But two years later, I received a diagnosis of type 2. I should have been prepared. Though I knew to take good care of myself, I had never truly accepted my diagnosis.

WHAT DID DIABETES HAVE TO DO WITH ME?

Years passed. And an odd thing happened on the internet: people began to talk about diabetes. Online, they came clean about their frustrations, anxieties and triumphs. They were funny and candid and earnest and sad. They did what I was unable to do – accept and embrace diabetes as part of their lives.

I began to lurk, then tentatively write, about my own experiences. At 55, almost a quarter century since I first had gestational diabetes, I came out. I wrote about years of frustration with unpredictable highs and lows. I wrote about dealing with the stringent diet and exercise, the link between diabetes and depression. I followed the most basic of dictums: Write about what you know.

What do I know? That diabetes is a controllable disease, and – for better or worse – has something to do with me. Which brings me to today. Out to dinner with friends, I casually pull out my monitor, prick my finger and take a reading. On occasion, someone will ask what I’m doing, and I explain, unabashed and unashamed. “You’re so matter-of-fact about it,” they say in reply. I can only smile.

They did what I was unable to do – accept and embrace diabetes as part of their

lives