How does living with diabetes impact on your daily life? That’s what we want to know in DB Voices. Looking past the considerable medical and logistical hurdles of multiple fingerpricks, injections, and inconvenient or frightening hypoglycaemic events, we’re wondering if there’s enough attention being paid to the more emotional and interpersonal effects of living with a chronic illness. In this series of articles we’re asking people to share the missing part of the story after the HbA1c is done and everyone’s gone home.
Thanks to Trevor for talking to Coralie James about the last 40 years living with type 1, and for sharing some great tips for the newly-diagnosed.
How has diabetes impacted on your relationship with your family?
I got diabetes towards the end of my university years when I was about to leave home. I don’t think either of my parents knew many other T1 diabetics and, given my age, they weren’t given the kind of information that parents of younger patients would have received. In any case this was 40 years ago, diabetes education centres and the like came along a bit later. Things are far better today.
Anyway, for years my mother blamed my diabetes on my switch to an unhealthy student lifestyle – staying up late, sleeping in, eating on the run instead of taking regular meals. Meanwhile my father – an engineer – took the view that this was a kind of human engineering problem which could be solved by setting up the right process and following it. Whenever my diabetes misbehaved I must have failed to keep to the system.
I was the oldest child of four, but we all had chronic illnesses of one kind or another, and diabetes was mine. My sister became a doctor and, later on, occasionally came to my rescue with an emergency prescription or two.
How has it affected your career?
I’ve always had intellectual jobs, not labouring ones (my last job which involved physical effort was in the university holidays before I was diagnosed). So I haven’t had the complication of strenuous and/or unanticipated activity requirements. I know many T1s work successfully in physically active jobs, but I’ve never had to. I do the same kind of work that I would have done with perfect health. I’ve never had any interest in doing anything else.
Diabetes may have cost me a couple of job opportunities when I botched the final interview by going hypo – the first time I didn’t notice until I got up at the end of the interview (I couldn’t remember any of it afterwards!), and the second time I had to ask for a break to get my blood glucose back in order, but I don’t think they were too impressed.
Usually I’ve been compos mentis for interviews and I have always been upfront about my diabetes.
Have your relationships been affected by diabetes?
I can’t think of many relationships of any kind (other than with my mother) where diabetes wasn’t already there when we started. My wife developed diabetes in her first pregnancy and it never went away. So the most important relationship in my life has almost always had diabetes as a major factor.
What about socially?
Hah. Well, it rules out impetuous trips away and spur of the moment sporting competitions. I always had to plan ahead.
What have been the negatives and positives of living with diabetes?
Two positives would be:
(a) getting educated more than I otherwise would be on how the human body functions; this information is useful for more than diabetes, people!
(b) the kind of discipline it imposes on your otherwise haphazard lifestyle; willpower and self-discipline are useful for more than diabetes, folks! 🙂
The negatives are creeping in after 40 years with this disease though. I seem to have escaped kidney damage and my eyes are generally pretty good, but I have developed some neuropathy, which does impact on my life a bit.
If only we had had insulin pumps and continuous glucose monitoring back when I started!
Being diagnosed can be a confusing and difficult time. What advice would you give to newly diagnosed diabetics and their families?
Once you get over the shock, anger and disappointment (and you will) your life will change. You will have an increased awareness of what your body is doing, and you will have to consciously do some of what other people’s bodies do automatically. The great thing about being diagnosed today is that facilities are available which will allow you to replicate normal functions very closely. This has made diabetes a chronic condition, not (as it was a couple of generations ago) a fatal disease.
Get into the habit of testing your BG often. Your blood meter is going to be your best friend. Record your blood tests, they’re not just for momentary assurance that you’re not about to faint. Over time you build up a valuable profile of how your blood sugar interacts with your lifestyle. If you can, upload your tests to a database – I use Diasend, which allows my endocrinologist access to check on me. Become risk-averse for a while. Join Medic-Alert (or whatever the equivalent is in your country). Find a support group (there are numerous groups on Facebook for the introverted, local associations for the rest).
Coralie James is a research writer with a Masters in Writing and a Bachelor of Arts in Psychology and English Literature. She reads widely in the areas of writing, psychology, human development, meditation, mindfulness and neuroplasticity – with a particular interest in supporting people to become all they can be. She is also a substitute pancreas for her energetic 9-year-old type 1 daughter.