Whether diagnosed with diabetes 20 years ago or just this morning, there are times that we all need a bit of help and guidance. Type 1 and Type 2 diabetes are conditions that come with a very real set of challenges – these include keeping track of treatment regimens, discovering new technology, staying abreast of research, assembling a team of medical support specialists, and living a full and normal life in between. It can be rather daunting – especially when you’re starting a family too.
There are myriad questions and concerns, and it may feel like nobody’s speaking your language. Many pregnant women with diabetes struggle to find the resources and support they need to manage their unique situation. To make things easier, we’ve put together a kind of roadmap to guide your journey to building knowledge and community. Here are some of the resources you might like to look at along the way.
Finding the facts
The internet is vast and so full of facts (and falsities) that it can be quite a job to sift through them. For pregnant (or hoping to be pregnant) women with diabetes, with so much at stake, it is especially important to find safe, reliable sources of information. Top picks for authentic online sources of facts about diabetes and pregnancy include NHS Choices, NICE.org.uk, Patient.info and Diabetes.org.uk.
NHS Choices is a user-friendly database of quick facts, patient education and tips for self-care, designed to be accessible to everyone. It has entries on Type 1 and Type 2 diabetes, as well as gestational diabetes, and also a short general section on diabetes and pregnancy. These are great as foundational research, but you might find you need more detailed information.
Patient.info is another good general reference, but many of the resources are written for health professionals rather than the general reader – which can make them feel a bit inaccessible. That said, if you’re comfortable navigating medical jargon, their resource on diabetes and pregnancy is worth a look.
Another UK-based resource that provides credible information about diabetes and pregnancy is Nice.org.uk, but, like Patient.info, it’s aimed at professionals – so isn’t always the easiest read. As you continue on your journey of discovery, however, you’ll likely find yourself becoming well-versed in the lingo. Nice.org.uk has a useful preconception-to-postnatal resource for mothers with gestational diabetes, as well as general resources for Type 1 and Type 2 diabetes.
Diabetes.org.uk is probably the premier online resource for the UK’s community of people with diabetes; a solid resource for anyone with Type 1, Type 2 or gestational diabetes. The organisation is committed to raising awareness of the risks of diabetes and the action we can take against it. The main site gathers much of what you need to know into one place; it lists local support groups, puts out a newsletter, carries information on new diabetes research, hosts blogs, gives tips and advice on how to live a healthy life with diabetes – and even has a (tasty) recipe section. But it is not aimed specifically at women with diabetes starting a family, although it does provide this helpful roundup of the basics. Many women with diabetes also find this information prescription on diabetes, contraception and pregnancy useful to print out and go through.
Engaging the expert(s)
Every condition has its medical guru, and as far as diabetes in the UK goes, the man is Dr Partha Kar. Dr Kar is of the United Kingdom’s foremost experts on treating diabetes – he’s the former Clinical Director of Diabetes for the NHS, and is currently the Associate National Clinical Director for Diabetes for NHS England. But his passion is patients, not paperwork: Dr Kar is committed to engaging with people with diabetes, learning how policies affect them, and what they want. His blog, Sugar and Spice, Wish All Things Were Nice, is an engaging and accessible record of his activities and thoughts, and a great way to understand what’s going on in the field of diabetic healthcare. He is also very active on Twitter.
Blogs, blogs, blogs
What we’ve covered so far are all great resources in their own right, but you’d be forgiven for feeling like they’re not entirely in line with your needs. That’s because few of the blogs and other digital communities have been created specifically with pregnant women with diabetes in mind (let alone those in the UK). Keep searching, however, and you’ll find these gems.
Six Until Me
Kerri Morrone Sparling’s Six Until Me blog is a major online presence, and a must-read for anyone who feels like their diabetes might hold them back from living life to the hilt. Sparling, who has Type 1 diabetes, writes about motherhood, pregnancy, the vagaries of managing blood glucose when you’re busy with kids and work and everything else … and everything else! This is a great resource, especially for women with diabetes, on how to live life with diabetes, not just have diabetes with a bit of life on the side.
Type Casted Diabetes
Type Casted Diabetes is another worthwhile pitstop on the web – Lori Anne Vogel is a prolific writer about all things diabetes, and her passion for community and better treatment is obvious. As we write, it has been a while since the blog was updated, but we suggest you keep watching that space.
Founded in 2008, Diabetes Sisters offers education and support for women with diabetes. The site has a panel of experts – doctors, therapists, nurses and researchers (mostly women) all weigh in with advice on how to deal with the challenges of life: eating right, getting enough rest and exercise, pregnancy and family planning, and so on. The site also hosts blogs, and has an active forum for women with diabetes to share their thoughts, questions and concerns. Women with diabetes who are considering starting a family, or are already pregnant, will find answers to many of their questions and concerns here, as well as useful resources and a sense of community.
This is all very well, you may think, but I don’t have time to read all the way through these blogs right now! Your concerns are real and immediate, and we understand that, so we’ve collected a few more specific blog posts here.
Laddie Lindahl is a Minnesota mom with Type 1 diabetes who had two pregnancies (both successful) in the 1970s and 1980s. You can read about her experiences here. Kerri Morrone Sparling (who we introduced above) has some edge-of-the-seat entries about her own pregnancy on Six Until Me, which you can dive into here. And Lori Anne Vogel’s entry on her personal experience as a pregnant woman with diabetes can be found here.
Once you’ve found your feet, you might want to start reaching out to other people who are in the same boat, to hear their stories, share advice, and gain some more direct support. A great way to do this is to check out various forums and Facebook pages/groups.
Finding online communities …
The Fixing Dad programme – which includes a website, documentary, book, Facebook community and, in partnership with UK organisation Ways of Eating, an app – has a holistic approach. It is aimed not only at people with Type 2 diabetes, but also their families and friends. Although Fixing Dad isn’t aimed specifically at women with diabetes who want to start a family, the lifestyle advice is worth perusing, and the programme’s environment supportive.
Diabetes UK also provides a large, active online forum, which is completely free and very user-friendly – all you need to do is register. All people with diabetes of any kind are welcome. Forum topics cover everything from pregnancy and family planning for women with diabetes to parenting children with diabetes, and how to lose weight.
Type 2 Diabetes
On social media, Type 2 Diabetes is a Facebook page with a strong ethos of help and support, on the topic of living with and managing Type 2 diabetes. The page’s stated goal is to be a space where people with Type 2 diabetes all over the world can have conversations about treatment, health and lifestyle. It is a supportive space to connect with people in the same situation, and although the group is not as active as it once was, it’s a good place to start if you want community, and lived-experience advice from fellow people with Type 2 who have had the same worries and questions as you do now.
With over a million followers globally, the Diabetes Support Facebook page is attached to the Information About Diabetes website. It is a very active space for information and discussion on Type 1 and Type 2 diabetes, with regular posts from users. It is a place to ask questions, give and get advice on managing diabetes from other people with diabetes, trade tips, find support and sometimes just vent. This page is useful for people who have been recently diagnosed, people with diabetes who are thinking of starting a family, or diabetes veterans who don’t have a big local support network. Members come from all over the world, with all types of diabetes, and the group’s’ content is as varied and interesting as its participants.
Type 2 Diabetes UK & Ireland
Also worth investigating is Type 2 Diabetes UK & Ireland, a regional Facebook group that focuses on providing advice and support to people with Type 2. It’s a closed group, which means you’ll need to ask to join – but once you’re in, you’ll find it to be a super space with caring, attentive administrators and a strong support community. At the time of writing, the group had close to 4 000 members, and it’s only going to grow.
… That really understand you
You may feel like the resources above don’t speak directly to you – they may be too general, global or not applicable to your particular situation. Fortunately, there are a few groups out there made up of people very much like you.
The Pregnancy in Type 2 Diabetes Support Group is a Facebook community aimed, as the name suggests, squarely at women with Type 2 diabetes who are planning to become or are already pregnant. If that is you, this is a group you should definitely join. Another option is the large and diverse Diabetes and Pregnancy Support Group, which is open to all Facebook users and provides a safe and supportive space to air your concerns, get advice – and encourage your fellow diabetes mamas. Mothers-to-be with Type 1 diabetes can join the private Type 1 (Only) Diabetes Pregnancy Support Group on Facebook. All of three of these are small, intimate groups where the limited membership makes for a personal environment.
Is that it?
As you’re probably starting to realise, there isn’t actually that much in the way of dedicated resources and support networks for pregnant women with diabetes (and even less when you narrow it down to the UK). Experts estimate that there are approximately 5,000 women with established diabetes who are pregnant and about 30,000 pregnant women who have gestational diabetes – that is, just 5 out of every 100 pregnant women in the UK at any given time have to think about diabetes. So you’re part of a small, select group. On top of this, you are an individual person with a unique background and life, so you have specific needs.
Going further: Guidepost Coaching Service
This is where we come in. Guidepost’s support coaching service gives people with diabetes unlimited access to expert coaches – supporting them every step of the way in their journey with diabetes.
Our accredited coaches provide individual compassionate support, technical guidance on medication, diet, food, exercise and more, and support to help you understand how to interpret and act on blood glucose testing. Guidepost coaches can also help you navigate your NHS journey. Coaches are available to talk one-on-one, and bring a fresh set of eyes and ideas to help you deal with your condition’s challenges and your individual needs. We’ll help you set and stick to treatment goals. For women with diabetes who are thinking of getting pregnant, joining the Guidepost network can help you create and achieve the blood sugar and health goals needed to ensure a smooth conception and pregnancy.
And because we recognise that there are few resources and supports groups specifically for you if you’re trying to get pregnant, we are launching our inaugural ‘Preconception and Pregnancy Programme’ in January 2018 to support women on their journey towards getting pregnant and beyond.
About the author: Carey is a seasoned writer with a passion for promoting health and wellbeing. She knows first hand what it’s like to live with a chronic condition, and uses every opportunity she has to read up on and share small bytes of medical information that may be helpful to others.
The information contained in this post is not meant to diagnose or treat any medical conditions. This post does not in any way replace consulting a medical practitioner.