Newly Diagnosed with Diabetes? Some Things to Think About
By Renza Scibilia
Diabetes advocate Renza Scibilia, gives five tips to consider when just diagnosed with diabetes
The diagnosis of a chronic health condition, such as diabetes, is often accompanied by many different emotions: shock, surprise, anger, guilt, fear and anxiety are just a few. For some people there is also relief, because they finally have an explanation for why they’ve been feeling so unwell.
If diabetes is new to you, you may be wondering just what you have in store. Unfortunately, it’s hard to describe what you’ll experience, because everyone’s diabetes is different. Some people adapt to their diagnosis a little more smoothly than others; you may find yourself moving quite comfortably into your ‘new normal.’ Or you may feel that you have been rocked to your core. Or maybe you’ll fall somewhere in between. All of these feelings are legitimate and real, and no one should be made to feel that they are ‘doing diabetes’ the wrong way or that the way they are feeling is not right.
If you are reading this and are newly diagnosed, welcome. This is a club that no one really wanted to join, but now that you are here, you can be reassured that there are many people, organizations, and groups ready to support you and help you out. You are not alone.
Please read that again. You. Are. Not. Alone.
While there is no right way to live with diabetes at the beginning – or, indeed, at any time – there are some things that you can do that may make the transition a little easier.
Let’s begin with some basics that you may be surprised even need to be said:
This is not your fault. It doesn’t matter what kind of diabetes you have or what you have done in your life until this point. No one asks to be diagnosed with diabetes and no one ‘brought this on themselves.’
Be kind to yourself. This is all new and there undoubtedly will be days that are tough. Don’t ever think that you are not doing enough.
Now that we have that out of the way, here are some ideas to help you navigate your diagnosis and feel supported along the way.
Find the right healthcare team
Not all healthcare professionals (HCPs) are necessarily familiar with the intricacies and complexities of diabetes. Finding a team that understands your type of diabetes and engages your health in the way you want is really important. It may take you a little while to work out what that relationship will look like: some people with diabetes want to set the agenda and direct their appointments, bringing in lists of questions (about treatment options, eating plans, choices in technology, etc.) and options to discuss with their healthcare team; others prefer to follow the advice and management plans given to them. Again, there’s no right way to engage with your HCP, but it is important to make sure that the person you see to help you with your diabetes understands what you need and how you need to receive that care.
More than numbers
At the beginning, it’s possible that you will see and hear a lot about numbers. Your glucose levels, your weight, your carbohydrate intake, your A1C, and your time in range may all be measured – you may also have doses of medication to remember daily. It can become overwhelming to have to record and understand so much information.
But diabetes is not about numbers – it is about much more than that! Numbers are not ‘good’ or ‘bad.’ They are simply data points for you to see, understand, and act upon. They are a way for you to track how certain things affect your diabetes management. If we think about monitoring our glucose levels and then acting on what we see (rather than judging the numbers as a measure of “good” or “bad”), they suddenly become far less daunting.
Find your tribe
There is a whole wide world of diabetes peer support available to you – that is, communities and networks of other people affected by diabetes who support each other to live day-to-day with diabetes.
There are many different options for how you can connect with other people living with diabetes. Some of the diabetes community is online and some is face-to-face, depending on the community in which you live. This is important because not everyone has the same needs for the community or wants to connect the same way. It can take time to find your place of comfort in the diabetes community. In the age of COVID-19, many groups that were “in person” have now gone online and are easier for broader groups to reach.
We wish that when people were first diagnosed with diabetes, one of the first points HCPs raised was how to connect with others walking similar diabetes paths – or even connecting with those who walk different paths. We know from our own experiences that finding our tribe is one of the most important aspects to managing our diabetes well.
Talk it out
At diagnosis, you may be introduced to some healthcare professionals that are new to you. It’s possible you will meet with a dietitian or a diabetes care and education specialist. You will probably be told about needing to have your eyes and feet checked, and about the healthcare professionals who will do those checks. Diabetes care often requires a team of HCPs, each focusing on his or her area of expertise.
Frequently missing from that team, however, is someone to focus on the psychological side of living with diabetes and coping with a new diagnosis. Diabetes is never only about blood sugar or complications. It’s never only about the numbers. However, too often that is the focus that we are given, without anyone to talk about how our diabetes is affecting our emotional wellbeing and mental health. You may consider seeing a psychologist or a counsellor to assist with this aspect of your diabetes care.
Your diabetes; your rules
As we have already said, everyone’s diabetes is different. It will take you some time to learn how you want to live with diabetes, and how you best manage it. Unfortunately, there is no rule book that sets out all the things you need to do and the way you need to do them. It would make things so much easier if that were the case, but in reality, diabetes really doesn’t follow many rules at all.
One especially helpful resource
Despite the uncertainty and lack of rules in diabetes, there is one book that I’ve found amazingly helpful for people with diabetes (whether or not they are newly diagnosed). Diabetes advocate and long-time diaTribe writer Adam Brown wrote Bright Spots and Landmines: The Diabetes Guide I Wish Someone Had Handed Me.
When the book launched, I reviewed it and wrote “I honestly wish that the day I’d been diagnosed with diabetes I’d been handed this book. I wish I’d had it on my shelf all these years as a resource to refer back to in moments of burnout or no motivation, or when I needed a little push to encourage me.”
Bright Spots offers practical advice on how different aspects of our diabetes care can positively and negatively impact our health outcomes. Adam’s tips are sensible and wise, and easy to adapt to your own brand of diabetes. There are over 500 five-star reviews for Bright Spots and Landmines on Amazon – you can get it free here or listen to it free on diaTribe’s YouTube channel.
Wishing you the best of luck as you navigate your diabetes journey!
This article is a part of a series to support people newly diagnosed with diabetes funded in part by the Ella Fitzgerald Charitable Foundation