Jim's story - Stigma and diabetes

I was diagnosed at age two some 24 years ago. As a relatively open person and an advocate of people speaking honestly about problems, I still struggle to talk about my type 1 diabetes, a condition I’ve had for many years, and 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 person living with diabetes, I wish there was this magic power where people could instantly understand everything that will impact my 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 inject yourself and eat loads of sugar, right?” I think these get to me most as they are simplifying something so complex.

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.  

Diabetes technology can make diabetes more noticeable; I refuse to have a pump as I believe it will get in the way of my sport and active life.

I’m so grateful for my FreeStyle 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 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 I least want to bring it up. An honest example is a date, I 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.

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. Running clears my head and makes me feel invincible at times.

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. Perhaps the biggest frustration with diabetes is the frustration itself. When I’m at my lowest and I’m feeling tired, defeated,

Managing my diabetes  

Managing my diabetes can change my mood; by making me lethargic or I can sometimes lose 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.

I’ve had challenging situations with my diabetes. I was going on a long-awaited holiday to Italy, finished work and headed to the pub to celebrate. 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 for me, 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 could be a cure in five years. The technology has improved massively but there’s no actual cure.

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 diabetes 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. 

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Reach out for support

If you are affected by the topics highlighted within this story or other stories on our website, you can access support from our helpline team on 0345 122 2399, Mon- Fri, 9am- 6pm, or email helpline@diabetes.org.uk.

You can join our free support forum – to connect with others affected by diabetes (minimum age 13). For more information, see our forum FAQs.

For those aged 11-25 living with type 1 diabetes, check out our youth programme Together Type 1 for a supportive community of people who understand what it’s really like juggling the ups and downs of life with diabetes.

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It's really important to do something if you notice symptoms of a hypo as your symptoms could get worse and you could start feeling confused and drowsy. For more information, please visit here.