Stigma and diabetes - Jim's story

We know sometimes living with diabetes means that you may experience stigma in your lifetime. We hear from Jim about his experience of stigma and how he keeps positive through it all. 

Experience of stigma

As a relatively open person and an advocate of people speaking honestly about problems, I still struggle to talk about type 1 diabetes, a condition I’ve had for 22 years. I wonder why I still see it as a weakness. In many ways type 1 diabetes has made me stronger, but at the same time completely beaten me.

As a diabetic, you wish there was this magic power where people could instantly understand everything that will impact your blood sugar levels. Everything from exercise, stress, nerves, excitement or alcohol. I’ve had too many ignorant comments that can almost accumulate to one. “Oh, you’re diabetic, don’t collapse on me”, “how are you diabetic, you’re skinny” “you don’t look that diabetic” “you just need to stab yourself and eat loads of sugar, right?” I think these get to me most as they are simplifying something so complex. Of course, it’s not malicious, there is just a lack of education around type 1. 

At university, I wouldn’t bother correcting people. I was worried people would think I wasn’t fun if I had diabetes. I remember playing an important football match for my university and having a hypo. In my mind I said I would finish the game and then deal with it later. By the end of the game, I struggled to kick the ball. I didn’t want to draw attention to myself and make out I couldn’t handle it, even though I showed just that, I couldn’t handle it.

Sadly, not all sport culture fits diabetics, the sport itself is fine of course but the excess drinking and social aspect that comes with it can be challenging, especially at university. You want to be part of it but fundamentally it’s dangerous. 

The physical stigma has impacted me, I refuse to have a pump as I’m phobic it will get in the way of my sport and active life. I also look at myself in the mirror and find my Libre (flash glucose monitor) unattractive, this is something I’m trying to solve in my head and slowly making ground.

I’m so grateful for my Libre but sometimes, I’m not. The intensity of having all your blood sugar levels data at your disposal can be intense and seeing every bit of the pattern through the day can get in your head. Sometimes when I know my blood sugars are high, I won’t check knowing it will make me depressed. Essentially, I don’t want high blood sugar levels, as it makes me think of complications. Complications like blindness and foot loss. This can get to me as my feet are my most important asset. 

People need to be aware, especially in high stress situations but sadly this is the time you least want to bring it up. An honest example is a date, you don't want to start by saying “hey I’m Jim and diabetic”. However, if alcohol, nerves and a stranger are involved, you probably should let them know you have diabetes. It’s the exact event where your bloods sugars will be all over the place.

Emotional impact of stigma 

The stigma impacts my head a lot and that’s why I have become passionate about running. I’m obsessed with all sports but running has been key to help me unlock a lot of frustration with type 1 diabetes. It seems to be type 1 diabetes' worst and best friend, it levels out my bloods sugars for hours, even days and it clears my head and makes me feel invincible at times. Of course, it also comes with dangerous hypos, as sometimes the intense exercise overshadows my hypo symptoms.

I’ve started running marathons for diabetes charities, like Diabetes UK to show myself and others that type 1 diabetes should never get in the way. I'm trying to champion the stigma as much as possible. 

Perhaps the biggest frustration with diabetes is the frustration itself. When I’m at my lowest and I’m feeling tired, defeated, embarrassed and down, this is when it feels like it will defeat me. If I have those ‘screw it’ moments it ruins all the work I’ve put in before. I have to be productive and incredibly on it all day (and night) to beat it, this is the sad reality, it’s a job no one sees with no pay.  

Managing my diabetes 

Managing diabetes can change your mood, by making you aggressive, lethargic or losing concentration. It comes into my life when I least want it, at work, playing sport, during exams, presenting, on the stage, at a party, meeting new people, you name it. Yet there’s still a misconception of diabetes. I’ve had comments like “it’s that thing where you have to eat loads, right”. And I think, can I be bothered to explain this, the intricate complexities of the condition? Or is it easier to laugh and agree to the comment. However, you have to draw the line sometimes and explain the difficulty of dealing with the condition otherwise it could be the end of you.

It's ruined relationships I’ve had, it made me my most low and made me my most ill but has also made me resilient and aware.

The worst situations really happen when you neglect it. I was going on a long-awaited holiday to Italy last year, finished work and headed to the pub to celebrate. A few (too many) drinks later we headed home. Excited and feeling on top of the world, I was heading to bed ready for my early flight. Suddenly I remembered, I hadn’t done my night insulin dose. I check around and couldn't find it, casual looking turns to stress. I wake up my housemate in a state. The realisation kicks in that it was left on the bus. It’s too late and I have no spares and a flight in a few hours’ time.

On another occasion I went out for a friend’s birthday and left my insulin in my flat. I just spent the whole evening worrying about when I would be back. This is arguably the worst part, you have to be organised to a whole new level.

Advice to others

Above all, surrounding yourself with the right people is crucial. I’m incredibly lucky to have friends who understand everything about diabetes and have even checked my blood sugar at the end of a night out. They find it hard sometimes as some days I’m joking and laughing about it with them but sometimes I can be more sensitive. 

I’ve had diabetes since I was two. When I was diagnosed, the doctor told my Mum there would be a cure in 5 years. 20 years later and it seems we aren’t any closer. The technology has improved massively but there’s no actual cure. No matter how far the technology comes, diabetics are still ‘diabetic’. This means there will still be stigma revolved around the condition. 

Though this piece might highlight the complexities, it’s worth saying I have been able to achieve everything I wanted and more in my life. I haven’t let type 1 get in the way at all, it comes with me but never blocks me. I’ve run marathons, been abroad, love going out, play all sports, been on stage, gone to music festivals and its always worked out. I want to go backpacking one day, which admittedly won’t be easy, but I will make it happen. 

Jim talks more about his university experience here. And in this video, Jim talks to us about the emotional side of living with diabetes.