My name’s Leah and I have had Type One Diabetes for 20 years and I have been in remission for Diabulimia for 6 years. I am currently under NELFT (North East London NHS Foundation Trust) for my Diabetes treatment.
When it comes to my own personal experience with having mental health problems alongside my diabetes, I have had a mix of positive and negative experiences when trying to access help and care. I have been lucky enough to be offered therapy on three separate occasions from my community diabetes clinic.
The first was when I came back from university and then the second time was a year later. I was attending my hospital appointment and my consultant decided to admit me for DKA (Diabetic Ketoacidosis) for the first time ever. He sat me down and wanted to have a conversation about the some of my routine results. This was when I decided I needed to have a brutally honest conversation about how I was really feeling, and I told my consultant I was skipping injections and that I believed I had Diabulimia. After a long conversation with my consultant, he referred me back to the community diabetes clinic and they made sure I went back to therapy sessions.
The third was during the pandemic and I am currently attending once every two weeks. I was really struggling with the shift in my routine (and the lack of it) and although I am having monthly consultations with the community diabetes clinic for the treatment of my diabetes, they are not really helping me find the solutions to the problems I am facing in connection with my diabetes management. The nurse offered me therapy which has really helped me process how I am feeling during the pandemic and be able to identify the negative thoughts and feelings I have and how to recognise when those not so positive thoughts that could be triggering are creeping back in. I realised during the pandemic I have been hyper focused on my diabetes because I had nothing else to do and I have been working on finding a balance.
Every time I have been in therapy, it has been for a different amount of time despite the core reason for being in therapy being the same. I know I am in a lucky situation where diabetics have access to therapy within the NELFT. If I wasn’t for the access that I have had to mental health treatment I know I would probably be in a very different place to where I am now.
Although currently my nurse has been great helping me with some of the issues I am currently facing, I would never have been offered more therapy sessions if it were not for the simple reason that I was sobbing down the phone to her. I was running out of patience; I was frustrated, and I felt she was not listening to me, or my concerns and I could feel the burnout kicking back in. I was having more and more negative thoughts towards my diabetes. I was doing everything she wanted me to do in terms of setting a routine and being strict with my diet (which six months down the line I am still doing to prove to her that it is my insulin causing the issues I am having. Something I knew this time last year was the issue and she is still reluctant to change it despite having the go ahead from my consultant at the hospital). It should never get to the point where someone is sobbing down the phone clutching at straws begging to be listened to because they can’t see a way out of the situation they are in.
I am lucky to have had some great support in recent years however, when I was a teenager, I was not so fortunate. I have had many situations where I have had no support. I had zero support whilst at university except from a yearly 20-minute review at the GP and I never had a hospital appointment the whole time I was there. Imagine being in a new city with no support and no real indication of how your diabetes is doing and no guidance on if what you are doing is right. Whenever I had a HBA1C done whilst at university, they would never tell me the result they would just say if it was good or bad and then ask a few questions about my injection sites and that would be it.
Another problem I’ve faced, is that I have always had a poor relationship with how I feel about my weight. This is something that started because of comments made by healthcare professionals at hospital appointments. These people who oversaw my care in the teenage years, made me feel it was my fault I was “A little on the heavy side” when there was so much more to it than that. When I would have a week of High blood sugars in my late teens because of my period both my sister and I were constantly told repeatedly that “periods do not affect blood sugars and we need to eat less” My sister was 14 years old and skinny as anything as was told to lose weight. When I told my nurse about my concerns for my weight at university, I was simply put on metformin and attended a 3-hour carb counting course that didn’t really help. There was no follow up to the changes and how they were affecting me to the point where I stopped taking metformin as some days I could not get out of bed and was constantly sick. When I told them that I stopped taking the Metformin she told me that I can’t really want to lose weight if I’m willing to give up that easily. I feel there needs to be more support whenever you change clinics or doctors, there needs to be an introductory meeting or appointment. This can be crucial so there is no pressure to jump right in and talk about your diabetes. You can just get an understanding of their approach to diabetes management and they can understand how you need support.
Diabetes burnout is a prime example of one the mental health issues that is caused because of having diabetes. It is something that could be so easily avoided if mental health awareness is included into our consultations. A few questions on how we are coping mentally with the changes in our regime or how we are feeling in general could save someone and highlight any issues much sooner. When I look at how my Diabulimia was diagnosed, it should never have got to the point where I told him what I was doing, it should have been picked up by identifying simple things. My HBA1C was consistently rising I wasn’t interested in everyday activities and my mood was very low with constant mood swings. There were days I would feel incredibly guilty about missing injections and take a huge dose of NovoRapid to “tide me over”. At the time of my hospital admission, my blood glucose levels were through the roof and my weight was dropping drastically where I lost over a stone in a month. The reason why I wasn’t diagnosed sooner was because on paper I was a completely healthy diabetic despite putting my body through years of torture prior. If those key questions about my mental health and how I was really coping with my diabetes were asked I don’t think I would have got to the point where I was like “actually I am not okay”.
There needs to be more done especially within teenage and adult clinics where they sit and listen to us. Friends of mine have been told repeatedly that they are the problem and not the advice and practices they are told to do. When we spend our whole days trying to navigate a disease that really is spontaneous and never reacts the same way twice, we are bound to get frustrated and have concerns and personally, 90% of the time I can get on with it and not be bothered by it. The problem is when that 10% of frustration happens and it becomes a daily occurrence, we need access to tools and resources to help us navigate those ill feelings.
When my mental health and issues (like Diabetes burnout) really started to creep in and take its toll, I had no support and getting an appointment at the GP was impossible unless I wanted to sit in the surgery for hours the same day waiting for them to fit me in. Diabetics are more likely to be diagnosed with a mental health condition including depression, anxiety and eating disorders.
I reiterate that we need some mental health sessions built into our diabetic care plans. Just like we go to clinics every 4-6 months, we should have a mental health check up twice a year. That way we have access to some support if we need it. Honestly, I believe if we all had a mental health appointment it would dramatically improve our relationship with how we see and feel about our diabetes.
We need more awareness for mental health support in terms of how we have can have a positive relationship with our diabetes. The number of times I have heard people say “other diabetics cope, why can’t you?” is ridiculous. Not everyone copes the same way, not everyone has a straight-forward care plan. We need to destigmatize that everyone with diabetes is the same because it isn’t true. People have different ways of coping and how they navigate and process what they are going through, and we need awareness of that. Unless you do some very deep research or are a part of an online group there isn’t very much out there. We need more advertisement of websites, podcasts, support groups that people can rely on if they need to.
Not only do we need more help and access to mental health services. There needs to be more awareness or training in general for family members of people who have type one. When someone Is diagnosed, parents or partners should be offered an awareness course. I remember when my sister and I were diagnosed my parents received no information except some basics and that was it. People need reassurance they’re doing things correctly and because there’s so much misinformation out there, (for example what to do in an emergency or even small things like how someone gets diagnosed with type one) we need clear concise information and support. I think a podcast that keeps it simple so its easy to follow would be an amazing way to get more concise and helpful information out there. Other podcasts where people share their experiences, their story so others know they aren’t alone would be great.
Written and sent by Leah Simpson