Reflections on 50 yrs with T1 Diabetes 1965 – 2015

Guest blog post by Lis Warren

After living with Type 1 for 5 decades, this year I’m celebrating becoming a Diabetes UK and Joslin Medallist.  Throughout the year I’ve been reminiscing and reflecting on how things have been and at times, wondering why and how I’ve been so lucky to arrive here!  I’d like to share some thoughts that have helped me stay optimistic and well in the hope that others may discover things to help them on their way.  I’ve made plenty of mistakes, so feel incredibly privileged to be a Diabetes Medallist, but thankfully learning from errors has usually spurred me on, so…

• Attitude is key.  It’s hard to dance with the devil on your back, so shake him off, embrace your diabetes, care for it and make it your friend!  It upsets me to see how fearful many people are for their future with Type 1.  If you hang on to them, fear and anger can be crippling emotions.  I hope and pray that those newly diagnosed, their doctors, friends and family can work through, manage and come to terms with negative feelings so that they can feel free, accepting of and most importantly, at peace with diabetes.

• The UK’s NHS is FANTASTIC!  I’d be long gone without the hard work and dedication of its many brilliant staff.  I’m also grateful for the things I’ve learned over the years from Diabetes UK’s Balance magazine (my only source of info, other than hospital visits, in my first 40 Type 1 years!), from JDRF and more recently, getting in touch with INPUT to learn about diabetes technology. My heartfelt thanks go to you all for your help over the years.  

• After a short period of wondering when a cure would arrive (always ‘next year’) I realised that it wasn’t worth dwelling on this.  However, taking part in diabetes research is one of the most interesting and enjoyable things I’ve done.  It’s incredibly inspiring to meet enthusiastic researchers, to learn things about diabetes you’d never otherwise discover and to meet and have fun chatting with other volunteers.  I wish someone had told me how rewarding this could be decades ago – even straightforward diabetes market research can be great fun!
• In some ways not much has altered in 50 yrs.  Attitudes have improved, the doctor/patient relationship has changed and new equipment and technology have made some things easier, but I still do exactly what I did in the 1960s i.e. try to match insulin delivered with carbs eaten without losing consciousness en route!  (Though in the 60s-80s, I don’t recall discussions about dose adjustment without ‘permission’, you did it because it worked and kept schtum.)
• The only real Game Changers for me have been the invention of home blood testing in the 80s, then continuous glucose monitoring (CGM) sensors.  CGM has taught me far more about the body’s reaction to exercise, illness, insulin, food, and stress than any other diabetes education or tool. Using CGM is like switching a search light on in a pitch-black world – it was something I’d fantasised about for years. It provides life transforming info about where to place your next step.  And despite the huge burden it places on me both financially and in lost sleep (those bloody alarms) it possibly keeps me ticking as I’ve experienced some life-threatening hypos over the decades.  My gratitude to researchers for these tools is absolute.
• I don’t think diabetes should be blamed for everything that goes wrong in one’s life.  It’s tempting to assume that every physical or emotional challenge is caused by it, and many non-specialist healthcare professionals also make this mistake.  If you’re not vigilant, making diabetes your scapegoat may happen unconsciously.  The stigma and bad press it sometimes gets may persist or worsen if it’s blamed for all one’s physical or emotional ills.
• I’m really grateful that as a teen, people around me never led me to believe that Type 1 could hold me back.  I adopted the stoic ‘grin and bear it’ attitude prevalent in my northern upbringing!  I’ve certainly had periods of depression over the years, but I honestly don’t think I’ve ever felt sorry for myself.  I believe that when youngsters with Type 1 reach a suitable level of maturity, they’ll thrive if well taught, supported and encouraged to take control.  I think it’s unwise to molly coddle or support a self-pitying attitude.
• Diabetes gives more than it takes away.  I’m grateful for the character traits it forced me to develop: resilience, acceptance of things you can’t change, determination, an ability to put health-related things into perspective, being sufficiently well organised to remember to inject then eat regularly, empathy for others with far worse conditions, and finally a modicum of self control around food (though this one took decades to develop!).
• I’m grateful that the high prevalence of eating difficulties in Type 1s (estimated at 40%) has finally been recognised and specialist support is now becoming more accessible.  Thankfully I learned to count carbs from day one as a teen.  But sadly, my personality type led to slavish weighing and measuring of carbs and a focus on body image, planting the seed for a difficult relationship with food that took years to resolve.  For people with Type 1, poor eating habits can both kill (as in DKA) and save your life (as in treating hypos).  In susceptible folk like me, food can become a problem.  I used it to manage emotions and succumbed to yo-yo dieting, which made things very hard and contributed to periods of very poor diabetes management.  A great deal of hard work put this to rest.
• Social media and the Diabetes Online Community (#DOC) has transformed the lives of people with diabetes by giving easy access to more and better information, as well as fantastic peer support.  Joining the #DOC was cathartic for me, as I’d never had close contact with other people with diabetes during my first 40 yrs of having Type 1.  This experience now motivates me to put all my energy into meeting others both on and offline.  I now realise how isolated one feels when you can’t chat with others, exchange views, follow new developments and laugh about the daft stuff we all do.
• Most people with diabetes seem to have a really great sense of humour.  I love the laughter that’s present at every diabetes get-together I’ve ever attended.  It’s a great club to belong to and you guys are just fantastic people – thank you all.
• It’s my view that science has a long way to go to match the miracles performed by a healthy body with carbohydrates and insulin.  Blood sugar management, even with CGM, remains a very Dark Art.  Intuition, experience, judgement and some guesswork are always required!  I often make mistakes, but I do trust my intuition and remain pretty wary of insulin bolus calculators.
• And last but possibly most important, I’m hugely grateful for the love, help, support and Glucagon administrating ‘skills’ (and consequent bruises!) given by my saintly husband, John.  I could not have won these two medals without him by my side – particularly at night when the hypos took over.  And I suspect like me, he’s also extremely grateful for CGM, as he’ll hopefully never have to inject Glucagon again (he’s terrified of needles!).

Lis Warren 27 Oct 2015