Welcome to the club no one wants to join. If you are reading this it is likely you, or someone close to you, has just been diagnosed as having Type 1 diabetes. This is the guide I would have loved when I first got diagnosed. Do not have the time to read? Go to tl;dr.
Everything Is Going To Be OK
First of all, while it may feel overwhelming, everything is going to be fine. There are Type 1 diabetics in most walks of life from elite athletes to pilots. Around 1% of people in the UK, USA, and Australia (1 in 100) have Type 1 diabetes. That is one in three or four school classrooms. Type 1 diabetes affects both genders roughly equally, people of all ages, and people from all walks of life. You are not alone.
You may not know someone with Type 1 but they are out there and dealing with it every day. For me, it was 11 months from diagnosis before I met another Type 1 diabetic in the flesh. There were plenty of resources along the way to help me though.
Two excellent online documents my endocrinologist pointed me to was the Australia JDRF’s Adult Guide, and the Australian Type 1 diabetes Starter Kit. These sites also have guides for parents, and guides for family and friends.
There are some really great resources for Type 1s in book form, written by Type 1 diabetics. Some of the ones I rate or which other Type 1s I know have rated are:
- Dr Bernstein’s Diabetes Solution: Even if you do not subscribe to Dr Bernstein’s very strict low carbohydrate diet, the book is full of information about diabetes and tips for managing it.
- Think Like a Pancreas: Great advice on how to manage diabetes with insulin as well as covering the essentials of what diabetes is.
- Bright Spots and Landmines: This is a more general guide for Type 1s and Type 2s. I have not read it, I hear good things.
- Sugar Surfing: While books such as Dr Bernstein focus on the more traditional basal + mealtime bolus insulin regimen, Sugar Surfing incorporates the use of a continuous glucose monitor (CGM) to do regular micro-adjustments of insulin. The people I know who do multiple daily injections (MDI), all rate this book strongly as a guide for keeping blood sugars within range
By far it was the online communities that helped me the most in the first 11 months. Practically every form of social media has some kind of diabetes group in it. While I do not ask a lot of questions on social media, it is great to listen to the questions and answers of others. Ones which I found (and continue to find) useful are:
- Facebook: So many diabetes communities here; some friendlier than others. Embrace the ones which work for you
- Twitter: Around the world are Twitter chats for diabetics. Basically, each week, diabetics gather to converse on a topic of the week. The format is a series of questions, thrown out to the group and people answer with the relevant hashtag. Ones I have participated in are:
- #OzDOC: The Australian Diabetic Online Community, this group is, sadly, all but wound up.
- #ADEAChat: A gathering of the Australian Diabetes Educators Association but diabetics are also welcome. The weekly chat is at 7:30pm AEST on Tuesdays
- #DSMA: The US-based Diabetes Social Media Advocacy meet at 9:00pm EST on Wednesdays
- #GBDOC: The UK-based chat which runs weekly at 9:00pm UTC on Wednesdays
- Reddit: A relatively new medium for me, Reddit has two Type 1 channels and the karma system ensures people are, mostly, on their best behavior.
- YouTube: Arguably the best diabetes resource on YouTube is Dr Bernstein’s YouTube channel. If his book is too expensive or you want to try before you buy, watch his hundred or so free videos.
A Good Health Care Team
At diagnosis it surprised me to learn it would take a team to help me manage diabetes but it is absolutely true. The best advice I can give is do not accept anyone into your health care team you are not comfortable with. You are paying good money for their expertise and service but this does not give them the right to make you feel bad about yourself. Diabetes is stressful enough without a health care professional exacerbating the problem. Get a good health care team and it will make managing diabetes so much easier. People you have on the team might include:
- An Endocrinologist (endo) for specific disease-related advice
- A Diabetes Educator to give you more practical day-to-day advice for managing the disease
- A General Practitioner (GP) for general medical advice (and generally cheaper than the endo)
- A Podiatrist for regular feet checks (diabetes-related damage often reveals itself in the feet)
- An Optometrist/Ophthalmologist for regular eye checks (diabetes-related eye damage can often be prevented through an eye check and early intervention)
- A Nutritionist to assist, if required, with food and nutritional advice. Try to make it one who specializes in Type 1 diabetics otherwise you will likely be told advice which may be useful for muggles (non-diabetic folk) but of limited value to someone who cannot process carbohydrates well.
- An Audiologist for regular hearing exams (or benchmark yourself with an online test list like this one and get the specialists involved when there is a measurable change)
- A Dentist for regular teeth checks (a diabetic’s sugary nature makes their teeth more susceptible to problems).
- A Cardiologist for regular heart health checks (diabetics have a higher risk of heart problems than muggles)
- An Exercise Physiologist if you are looking to get into shape to help manage the disease
With the internet you have the ability to go into as much detail as you like on any topic you desire. You are the best advocate for your health and well-being so be the strongest advocate you can be.
Topics worth researching include:
- Food and nutrition. Understanding which foods have low carbohydrate levels, which foods are low GI (glycemic index), and how you can ‘hack’ the GI of foods can be very beneficial in managing blood glucose levels
- What those blood tests actually mean (and do not be afraid to suggest additional tests if you think they will help inform your management. In my experience endos and doctors are happy to add other measures to their list of blood tests if you ask)
- What do your medications do and how to avoid the side effects e.g. taking Metformin in the middle of my meal helps me to avoid embarrassing side effects
- How does diabetes work. Understanding how Type 1 works means you can effectively assess the relevancy of information you come across. It might be information useful exclusively for Type 2s or it could be complete nonsense. With a good knowledge of Type 1, you will be able to discern the difference.
- What is the latest medical research? An excellent source of information is NCBI which contains a vast repository of the latest medical research. I try to review this at least once a month for new findings to help inform my management. For example it was through NCBI that I found the growing evidence that DPP-4 inhibitors help preserve beta cell function in newly diagnosed Type 1s. With this evidence I then convinced my endo to prescribe me saxagliptin to help extend my honeymoon
Another way to get educated is through courses set up by diabetes groups in your local area. Often these are free and provide a great foundation for the newly diagnosed. Your endo or Diabetes Educator should be able to point you in the right direction.
If you are venturing onto the internet for information, you will need to be discerning about the quality of the sites you visit. As mentioned, NCBI is an excellent source of information but there are plenty of junk sites out there promoting their own snake oil products and feeding fearful diabetics a lot of nonsense.
Similarly, do not take medical advice from strangers online, me included. Some self-important bloggers and Facebook pundits take it upon themselves to insist, for example, that every newly diagnosed Type 1 should go onto insulin as soon as they are diagnosed. While this may be true for many Type 1 diabetics, it is far from a blanket rule (I am a prime example of this as I am still in insulin-free honeymoon as I write this, two and a half years after diagnosis, with well-managed blood glucose levels). If someone online is telling you to start or stop a medication, especially one as serious as insulin, walk away. This is a decision for you and your health team with careful consideration of your specific symptoms and medical history.
Get To Know Your Blood Better
What I mean by this is start keeping track of your blood glucose levels. I initially started with a glucometer (the machine with the strips). Using an app like MySugr I was able to record my blood glucose readings before, during, and after meals, and understand which foods were ‘friendlier’ than others. This allowed me to make smarter food choices and bring my HbA1c under control. These days I use a CGM which provides a wealth of information about the things that affect my sugariness.
While Type 1 diabetes may seem daunting and overwhelming when first diagnosed, it is manageable and the proof are the millions of Type 1 diabetics out in the wild doing it every day.
By educating yourself with quality information and getting involved with online and offline diabetes groups, you can get through this and thrive as a Type 1.
PDFs and Pages:
- Australia JDRF’s Adult Guide
- Australian Type 1 diabetes Starter Kit
- A guide for parents of a Type 1 diabetic
- A guide for family and friends of a Type 1 diabetic
- The US JDRF newly diagnosed guide
- The Diabetes Canada newly diagnosed guide
- Facebook groups
- Twitter chats:
- #ADEAChat: 7:30pm AEST on Tuesdays
- #DSMA: 9:00pm EST on Wednesdays
- #GBDOC: 9:00pm UTC on Wednesdays
- Reddit Type 1 channels
- Dr Bernstein’s YouTube channel
Books written by Type 1 diabetics:
A good health care team:
- An Endocrinologist (endo)
- A Diabetes Educator
- A General Practitioner (GP)
- A Podiatrist
- An Optometrist/Ophthalmologist
- A Nutritionist
- An Audiologist (or an online test list like this one until there is a measurable change)
- A Dentist
- A Cardiologist
- An Exercise Physiologist
Online courses run by local diabetes organisations.
A glucometer and an app like MySugr, or a CGM to help you understand how your body reacts to different foods.