I feel like there’s a grey area with a diabetes diagnosis and the mental health issues and physical health issues it can come with: there is so much that healthcare professionals do not tell you.
On Instagram, there are thousands of cute infographics telling you how people living with diabetes are twice as likely to experience anxiety and/or depression than someone who does not have diabetes. Blood sugar fluctuations cause mood changes/swings, anxiety, depression, irritability. Diabetes causes physical changes in the brain which can and does affect our mental wellbeing. This information is not given to you at the hospital, and despite the wealth of information online about diabetes and mental health, most websites water it down so much and still do not provide this information about the condition. Diabetes is rendered as just a ‘thing’ you have, and that is that.
Why this attitude towards diabetes needs to change
This needs to change. In the weeks following my diagnosis with type 1 diabetes, I found myself falling deeper into a pit of despair, completely overwhelmed that this was life now, having to deal with so much daily. The strain on the brain is intense and I had no support at all. I have always been aware of the fragility of life, but I think it is human nature to think “it won’t happen to me”, it is a defence mechanism. But now, my life suddenly became this incredibly fragile flower that was in my hands. You are thrown into fighting to stay alive all day every day; it is not natural and it has a huge impact. I remember that first week post-diagnosis. I was too afraid to sleep, too afraid to eat, even too afraid to inject insulin in case they had got it wrong and I actually was not diabetic. This huge fear of absolutely everything washed over me, but the hospital just sent me home because my dad also has type one diabetes. To this day, I am still dealing with this; I go through phases where eating, sleeping, even walking outside, is a big issue and a fear, because I am worried what my body will do.
My dad, who has lived with type one diabetes for 40 years, has never spoken about his battle with this illness; it is his way of coping. Despite growing up with my dad living with this condition, I had no idea how hard it actually would be. I felt ridiculous bringing it up with my diabetes team, but I reached a point where I felt like I could not continue like this if I did not reach out.
Dealing with grief and mental health support
My team was receptive, and offered to arrange an appointment with a Diabetes Psychologist, yet despite enquiring several times over the first 8 months of diagnosis, I heard nothing. Much of my diabetes journey has been filled with anger, frustration, denial. I have been grieving for my life before I got sick, which is incredibly hard when there is no professional help available. It is widely known that chronic illness is isolating and causes mental fatigue; so why is it that mental health care within diabetes treatment is so overlooked?
With type 1 diabetes, the constant monitoring, needles, highs and lows along with the debilitating physical symptoms that come with it; fatigue, headaches, nausea, aches, it is constant.
It was not until I joined the diabetes online community that I quickly found out that there were so many others in my situation; struggling with their mental health, acceptance of the disease and little to no support. Meeting other people who, while having a very different experience with type 1 diabetes to me, could relate to what I was going through was such a huge help.
Over the last two years, I have felt like much of my identity has disappeared since diagnosis and I am still struggling with acceptance. It can be really difficult to separate yourself from your illness/illnesses, especially when diabetes demands your attention and focus, 24/7.
Finding the light at the end of the tunnel
It has taken quite a while, but I finally feel at a point where I can recognise myself again to an extent. This has come about after figuring out what my coping mechanisms are, and how to utilise them. Here is a list of things I do to help me get through life with diabetes and alleviate the mental load:
- Sewing, arts and crafts.
- Photography- expressing myself through this medium has been incredibly cathartic for me.
- Journaling; it gets all of the negative energy out and the thoughts and feelings you cannot verbally express.
- Gratitude lists; sometimes it is difficult to see the good when you are having a hard time with diabetes. Writing a gratitude list helps me appreciate life beyond diabetes on those harder days.
- Reading; getting lost in a really great story helps with easing the permanence of thoughts related to diabetes.
- Having a dance; endorphins and moving can make a big difference.
- Watching a movie; pure escapism to any realm of your choosing.
There is pressure from healthcare professionals, people online and people in real life, to be super positive and inspiring about your illness, but you don’t have to love diabetes or be positive about it all the time- it’s unique to you, as is the way you deal with it. Diabetes does not have a destination, it is a journey. I have started to learn that you have to take things one day at a time, and there is no rush where mental health is concerned. It is a relentless battle that can wear you down, but there will come a point where the bad days are outweighed by the good. Keep moving forward, you have got this.