Unheard and largely misunderstood – My journey as a diabetic

I remember the day very clearly – 18^th September 2017.

That was the day everything changed for me. I was 22 years old, had just my Master’s degree in Counselling Psychology, and was trying to live my early twenties in Mumbai, the most happening city in India. I was also a ‘nerd’; I never missed a lecture, rarely ate in the canteen, and always came straight home from college.

And then I got diagnosed with type 1 diabetes – To say this felt like I’d been dealt the most unfair hand in terms of my health would be an understatement.

I’d heard of diabetes, my grandmother had it and so did an acquaintance of mine. So I knew roughly what it was, but I didn’t really know what it meant. The only person who truly understands diabetes is someone who’s going through it.

For me, diabetes came with a significant number of personal challenges. At first, the only thing I used to worry about was, “I won’t get to eat ice cream and French fries!”. Little did I know that food would soon become the least of my worries.

Things people say to me as a diabetic

Statistics suggest that globally 1 in 10 people have diabetes. I’m sure each person’s experience is subjective. One of the biggest challenges I often face is navigating the comments people make about the condition, usually because they don’t know the right thing to say or simply lack awareness.

While there might be no right thing to say per se, there are a few unconditionally ‘wrong’ statements. Here are some that people have said to me:

“You don’t look diabetic”

I don’t know about everywhere else in the world, but in India, it’s a common belief that our eyes are scanners and we can look at people and tell them their past, present and future. I know – ridiculous, right?

How does one look like a diabetic?

I never understood this comment. With age, of course, I’ve learned how to deal with it. But when I was freshly diagnosed, this statement irked me and awoke the red monster of rage. Even though I didn’t look diabetic, I still had it. It felt the same as telling Steph Curry, “You don’t look like a basketball player.”

“At least it’s not cancer”

I clearly remember the context around this comment. I was recently diagnosed and had just spent the last 10 days in the hospital. Once I got out and had taken some time to regain my energy, I rejoined the university.

The people were still new to me, as I’d not spent much time with them before I had to go on my ‘break’. I was talking to a classmate about what happened, why I looked weak, why I missed classes, and why they’d had to cover for me – And she said, “Thank God it’s just diabetes. At least it’s not cancer.”

I’m sure her intentions weren’t malicious, she probably meant it’s manageable. However, the sentence did more harm than good – Type 1 diabetes is as permanent and as fatal as cancer.

“Now you won’t have to put in effort to lose weight”

Among all the misconceptions about diabetes, the most common is that diabetics can’t eat sugar. This statement is partly true but incomplete. While we definitely can eat sugar (if we bolus properly), it would be better to avoid sugar, jaggery, honey, wheat flour, biscuits, confectionery, rice, potatoes, etc.

Since my diet is naturally restricted, I’ve heard from multiple people how they’re jealous of me because they can’t control their diet and find it tough to lose weight – Whereas I’m ‘lucky’ because it’s automatically being done for me.

“You’re a psychologist, so handling this change and stress will be easy for you”

There is a solid reason why I don’t tell people at parties what my profession is – Somehow, everything becomes about psychology!

Just because I’m a psychologist doesn’t mean I’m not human or that I’m above all human emotions and feelings. Expecting that psychologists should be able to handle stress without getting overwhelmed is like saying cardiologists should never get a heart attack.

Diabetes comes with a lot of challenges (like expenses, travelling, taking injections in college, going out to eat, dealing with societal comments, and wearing certain clothes). Handling all of these on top of the standard things that every other young adult pursuing higher education has to deal with was hard. And people expecting me to handle things more easily just because I was a student of psychology didn’t make things better.

How I learned to handle these comments

While these kinds of statements frustrated me in the beginning, I soon realised that my problem wasn’t what people said but that I couldn’t see things from their perspective. Everything they said was true.

• I didn’t have to go through chemo, I just needed to take insulin injections.
• I didn’t eat unhealthily, so I didn’t gain much weight.
• Etc.

I wish there had been someone present to tell me I didn’t have to look at the situation positively (like everyone at the time said I should).

I just had to feel what I was feeling; all the anger, unfairness, anxiety, and many other emotions – Because they were natural and appropriate.

Final thoughts

I’ve always been an empath. It’s in my nature to look for the best in people and not take things to heart. I recognise that what people say often results from unintentional ignorance. However, it’s still difficult for a person with diabetes to hear.

In the 8 years I’ve had diabetes, what I’ve learned from the things people have said to me is to not only not say similar things to other diabetics (or to people with any other illness), but also to educate them. It’s my responsibility to be polite, but assertive, and help them understand why their statement may not be helpful.