Living with Type 1 Diabetes: An Interview
In the UK, it is estimated that over five million people will be diagnosed with diabetes by 2025. Of those currently diagnosed, around 90% have Type 2, 8% have Type 1, and 2% have a rarer type caused other factors.
For World Diabetes Day, Redbank House interviewed 21-year-old Isaac. He has Type 1 Diabetes and is currently a student at University of Manchester. Unlike Type 2, Type 1 diabetes usually occurs in childhood and is unrelated to diet or lifestyle. We sat down with Isaac to learn more about his diabetes, and how he copes with it in his day-to-day life.
Read Isaac’s story below.
How old were you when you were diagnosed?
I was 13 years old and in year 9 when I was diagnosed. I’m pretty sure this is a standard age for diagnosis of Type 1 diabetes. There were a few people with type 1 diabetes at my school when I was diagnosed, so from day one I realised I wasn’t alone. In fact, I remember being in the last year of secondary school (year 11) when a couple of year 9s were both diagnosed at the same time. I guess my age of diagnosis was typical.
What were some of your symptoms?
I only remember having one symptom which was an unbearable thirst that wouldn’t subside. I’d drink every liquid in the house just to try and quench that thirst. But because I didn’t know I was diabetic; I’d be drinking all sorts of sugary drinks that, unknown to me, would raise my blood sugars higher and higher. No matter how much I’d drink, I was still thirsty. I even remember filling my mouth with water to try and hydrate my tongue, but it’d still feel so dry.
I told my parents about that symptom and immediately they thought the worst. Type 1 diabetes is quite prevalent in my family and affects the men on my mum’s side. I guess with my symptoms and my family history those warning signs were of heavy significance. We went to the GP about it and the doctor immediately took a blood glucose measure. My blood sugar was so high it was off the scale. Luckily, due to my parent’s knowledge of diabetes, I was able to go to the doctor quickly and get treated. The thirst shortly went after that.
How do you manage your diabetes?
I’ve recently started managing my diabetes differently. For years I treated it through injecting insulin throughout the day (one dose of long acting insulin lasting 24 hours before bed, and regular doses of short acting insulin with food to regulate my blood sugars). When I’d inject short acting for food, I’d manually calculate how many carbs were in each meal and inject accordingly. Manual blood glucose tests kept me informed of my blood sugars throughout the day, so I’d know how much insulin to inject with each dose.
Nowadays things are a lot simpler for me. I have a continuous glucose monitoring system fixed to my arm sending constant updates of data to my phone of my blood glucose and patterns. To access this information, I simply scan my phone along the sensor to get an immediate reading. This has made life so much simpler.
Recently, I got an insulin pump fixed to my stomach which gives me constant doses of short acting insulin in replacement of my long acting insulin. This short acting insulin is given automatically; however, I can adjust myself manually by inputting different data if I want higher or lower results. I still carb count for meals, although now I simply input the amount of my carbs into my pump and the pump works out how much insulin to give for meals based on both the carbs I’m having and current blood glucose. This also is a life saver, especially considering many of us diabetics need different ratios of insulin throughout the day which can be complicated to work out.
Since getting the pump, my blood glucose control is much better as it delivers insulin more effectively than a manual insulin injection could. Managing my diabetes now seems a lot less stressful than before.
Did you ever feel the need to hide it from people?
I’ve never really felt the need to hide it from anyone, in fact I think it’s important that people know. I remember the GP who diagnosed me at 13 saying “Nowadays diabetes care can be very discrete, the needles are very small, so no one has to know and it’s easy to hide”. Looking back, his approach was very dangerous health and safety wise and not what you want to hear after being diagnosed with a chronic illness. Luckily, I didn’t follow his advice. It’s important not to hide your diabetes, no matter your surroundings. My philosophy is you should never feel shame over any aspect of your life that you have no control over. People may have opinions about you, but that shouldn’t impact your view of yourself or how you go about life with your limitation.
Although uncommon, there’s so much that could go wrong with diabetes. Therefore, it’s essential that people know about it for your own safety. That way if something were to go wrong, the people around you would immediately know what to do and who to call rather than being confused and unsure as how to react in that situation.
Were you worried about managing your diabetes at university?
I wouldn’t say I was worried about diabetes when I started university as my attitude to diabetes was quite nonchalant back then. Recently, I’ve become more proactive in my diabetes management. I would say managing diabetes at university is harder due to the lifestyle. There’s very little routine as a student, which probably means my diabetes suffers. I can wake up at different times each day, my mealtimes can be quite irregular. My physical activity can vary too.
I believe routine makes diabetes care easier to manage as you can adapt your management around it. Applying that vice versa is more difficult. Also, the drinking culture at university can put a strain on diabetes. When I’m drinking, I just ensure that I inject for alcohol, take sugary sweets with me in case of a hypo and test my blood sugars more regularly. That way I can still have a good time while taking my diabetes into consideration. It doesn’t stop me having a good uni experience, I just plan more carefully.
Has diabetes ever affected your work or education?
I’ve always had quite physical jobs. I’ve been a carer in a busy nursing home and part of the bar staff in an equally busy pub. The physical elements of those jobs have often made hypos occur more regularly, although it’s never been too much of a restriction. I’ve always ensured my employers and the people I’m working with were aware of my type 1 diabetes. This is due to the health and safety element I mentioned previously and so they understand that I’m entitled to a break when a hypo occurs. I’ve found employers have been very accommodating of this. They’ve always allowed me to stop what I’m doing, treat the hypo, recover, then return. I’ve never believed my diabetes has restricted me in employment.
I’ve never really found diabetes a hindrance to my education either. However, I can find exams quite stressful as I tend to worry about hypos occurring. During GCSE and A-Levels, the exam boards were quite considerate in recognising diabetes and allowed adjustments to be made in the event of a hypo. When I sit exams at university, I like to purposely induce high blood sugars beforehand to prevent a hypo occurring. This may not be the most sensible idea, but I’d rather a brief high blood sugar than having to resit or fail.
How do you correct a hypo?
If I have a hypo I will either have a few Dextrose tablets or drink most of a bottle of Lucozade to get them back up. I’ve found the sugar tax is annoying for me as a diabetic due to the heavily reduced amount of sugar now in Lucozade. Back when I was thirteen, I’d only need a small amount to get my sugars back up but now I drink the whole bottle.
What’s the hardest thing about having diabetes?
I’d say the hardest thing about having diabetes is the anxiety regarding it. I often worry about what could go wrong, more so in the long term than the short term. The idea of diabetic complications occurring in the future does concern me. If I’ve had a particularly bad day in terms of high blood sugars, I can find myself dwelling on the consequences that could occur in the future (such as losing my sight). These are obviously worst-case scenarios which can be avoided with proper care. However, I sometimes think that managing diabetes is easier said than done.
What have you learned from having diabetes?
My planning skills have definitely improved. Everything must be carefully planned in a way a non-diabetic wouldn’t. Even when I leave the house I must ensure I have a whole host of items with me. I guess years of this has allowed me to have a better idea of planning and problem solving.
What advice would you give to someone who has just been diagnosed with diabetes?
The first thing I’d say is don’t panic. There’s so much information to take in and process when you’re first diagnosed. No matter how stupid they might sound, my advice is to ask questions so that you’re fully informed of your illness. Diabetes shouldn’t and doesn’t have to rule your life. While it’s important to live a healthy lifestyle, don’t let it consume and restrict you. With careful planning, you can do everything you did before. The preparation will eventually become second nature and find its way into your life. When you have this mindset, you can manage your diabetes without even thinking about it. That’s why it’s important to stay in good habits for your own health.
If you stay on top of things, you can prevent any serious consequences occurring for as long as possible. Sometimes your quality of life can be at the expense of your blood sugars, but that’s okay. If you’re just having the odd bad day once in a blue moon because you’re out living your life, then don’t stress. You’re entitled to have fun! You just need to ensure that the good days outweigh the bad in general. Live your life to the full, but remember to be aware of your diabetes – this is the best advice I can give.