Diabetes is a complex, multifaceted condition influenced by physical, social and psychological factors, all of which play a huge role in the self-management of the condition. The psychological impact of living with diabetes can often be ignored by health care professionals which may result in increased worries, and difficulty managing these worries.
As a person living with diabetes, the question “what does a person living with diabetes worry about?” created a storm of thoughts in mind. Just from this one simple question, a thousand thoughts and worries that go through my mind daily, popped out of nowhere. The scary thing is, until you sit down and consider these worries, the reality is they go unnoticed every single minute/ hour of the day. This is because worrying often comes part and parcel with the condition.
Worries about type one diabetes
I have always been someone who worries a lot, and I have no shame in admitting that my type 1 diabetes diagnosis in 2019 has exacerbated my anxiety and specifically, my constant worrying. I think this comes from the continuous burden of making treatment decisions which is followed by the cycle of worrying whether my decision was “right” or “wrong” (because, let’s be honest, diabetes doesn’t give us much room for error!).
Here’s an example of a few thoughts that go through my head every day: “Do I need to give more or less insulin?”, “Have I made the right treatment decisions?”, “Have I carb counted my food well, or not?”, “Have I got enough low snacks near me for this meeting?”, “Will I hypo tonight?” and “Have I got everything I need when leaving the house?”. And these are only a handful of examples I’ve managed to come up with.
It’s normal to worry about the future and what that looks like, but living with diabetes introduces a somewhat warped sense of the future. This comes from the worry about long-term complications due to poorer glycemic control or even, just worrying about future complications even if you have “good” control. In my head I am aware that I am in control of my future, but diabetes has a way of making you feel that actually you are not in control at all. Early on in my diagnosis, I would try and do everything in my power to achieve 90% + in range a day, this included opting for low carb options and avoiding certain foods because I thought that’s what I had to do. But now that I am nearly 2 years in, I have a much healthier relationship with food and happily go out to eat, employ an educated guess, inject and eat (and I don’t focus so much on worrying about my time in range!). Because for me, this helps with my worries and anxieties more than restricting my food choices.
Being a woman with type one diabetes
As a woman living with diabetes, I often find myself worrying about pregnancy and type 1 diabetes, too. For me personally, the idea of pregnancy is already extremely daunting, but when you add type 1 diabetes into the mix – wow. It’s going to be a lot to handle. There is so much emphasis from our health care teams about the importance of getting our blood sugars in much tighter range ahead of pregnancy, it does make me worry about how strict I might have to be with myself when I eventually want to start a family. And realistically, pregnancy cravings are going to be a battle…
Asides from future complications and worries surrounding pregnancy, it is so easy to begin worrying about what your work colleagues, friends, family and strangers think of you. When you live with a chronic illness, guilt is often an emotion experienced daily. This can be feeling guilty for letting a friend down because you’ve been up all night with high blood sugars, or feeling guilty about being late to a meeting because you had to eat, or you experienced a low blood sugar. This can then manifest into worrying about what people think of you.
What is an invisible illness?
Diabetes is very much an invisible illness, until it’s not. Until you see someone with a CGM, FGM, an insulin pump or someone injecting insulin, you would never know they had T1D. This can cause feelings of self-consciousness and feeling as though you need to hide your medical devices away, in fear of being judged. I have been subject to the displeasing looks when I am out to eat and have to inject. People do not realise that by staring, and making comments (even if people do not necessarily mean for it to come across in a negative way) it can have a tremendous effect on someone’s mindset and attitude towards their diabetes. When, in reality, all we are trying to do is inject insulin so we can eat the food in front of us. And that is nothing to be ashamed of.
So what are a few things I try to do to manage my worries?
- Have a good support network around me. Being able to chat through the not so great times, really is invaluable when living with a chronic illness. Support is essential when considering the highs and lows (literally) of diabetes.
- Meeting other people living with diabetes. Being able to chat with other people living with the same condition really is priceless and provides me with a lot of comfort. There really is nothing quite like talking to someone who just gets it.
- Seeking mental health support from my diabetes team. Getting extra support when I feel like my worries are starting to get a bit out of control, and working on that with mental health support. For example, I am currently doing CBT with a therapist as I began to notice that my worries were becoming too consuming.
- Being able to notice when my worries are getting too much and knowing when to take a step back. Self-care is something that is spoken about a lot in mainstream media, but self-care is so important for the mind, body and diabetes (haha). Self-care looks different for everyone, for some people that might be taking a long bath or going on a simple walk. For me, being able to take a step back to not feel all-consumed by diabetes and it’s management really helps to reduce my worries and feel more positive about my management.
I’d love to know how you manage your worries and whether your worries are similar or different to mine. Let’s carry on the conversation, follow Quin on Instagram, Twitter, Facebook and Sophie @typeonesoph on Instagram.
Note: Thank you for reading. Everyone’s experience of worrying and anxiety will be different. This is Sophie’s personal experience. Yours may look different, and that’s ok, too! Quin is here to support you either way.