by Charlie Granby
“Blistering rash, face and chest are sore with angry red spots… Well I’ve never had that before… Dry mouth, two weeks pass, drop 20 pounds, out of nowhere. Unbearable thirst, surely not I’ve just drank a litre in the last hour... Constant toilet trips. Tiredness like never before; sleeping all the time. Mood swings. Eating, eating, eating... we’re sorry, your pancreas has died.
Diabetics are twice as likely to have anxiety, depression and serious psychological distress.
Diabetes as an illness physically changes the brain; high and low blood sugar levels cause mood swings/anxiety/depression. The illness itself comes with a grieving process, denial, guilt, eating disorders or a poor relationship with food due to the effects food has on diabetic bodies.
Having type 1 diabetes has hugely changed my mental state, my outlook on life. In many ways I feel like it has completely crushed me; a lot of the time I feel completely stripped bare of who I was pre-diagnosis, I am mourning that version of myself and that time in my life. I think about all the things that are affected/limited by the fact I have this disease. I can still do anything I want, but a lot of things are with consequence/limitation.
Following diagnosis, I have been experiencing periods of depression and suffer with ongoing anxiety (which I dealt with pre-diagnosis), diabetes distress. Most of the time I feel like I am just about keeping my head above water; it’s often overlooked how hard it is managing a 24/7 chronic illness, holding down two jobs and trying to live my best life!
Outside of my illness, I am a very positive person and I love my life! I think it’s a gift and not to be wasted, which is what frustrates me so much about having chronic illness because it takes up so much of my brain power. I’m sure many other chronically ill people can relate. We just want to have fun and not worry all the time.
Other times I feel like it’s ignited this huge passion within me to advocate and educate everyone in the entire world because I am so passionate about sharing my experience with this disease. Not from a “hey poor me” perspective, but because actually it’s incredibly important AND the science behind type 1 is very interesting and worth talking about. I’ve grown up with the ignorance surrounding type 1 as my dad has it, and I’ve been frustrated by the ignorance surrounding it for the longest time.
They don’t prepare you for what happens following diagnosis; when you leave the hospital and you’re on your own. The sleepless nights, the fear that comes with hypos, fear of dying in your sleep, anxiety and depression, the physical symptoms.
Mental health care is not accessible to adults with diabetes. I got diagnosed at 23 and was placed immediately I to adult diabetic care. Paediatric diabetes care is from birth to 25; I found this out in August 2019, 4 months since diagnosis when my doctor admitted I had been overlooked because they assumed I knew what I was doing. The day I got diagnosed, I was sent home and ordered on strict bed rest for the next month, and that was it. There were no education classes, no leaflets telling me to prepare for the utter hell my brain was about to go through. It has all been through my own research that I have figured this out.
I remember feeling so confused; both isolated but also held close by those I love. My friends both in real life and online were incredible, I was sent care packages with glucose tabs and letters, even a carb counting book. My fiancé was in Toronto but felt like he was right there- he knew exactly how to help me, even though he was an entire ocean away. Despite all this amazing support, I felt like I was in this dark room even though the sun was coming in each morning, I couldn’t see it. I couldn’t understand why I felt like this; surely type 1 wasn’t this bad? Was I going crazy? I reached out to other type 1s on Instagram and it was both helpful and not. My mind wasn’t receptive to any form of advice unless it was from one or two people who I trusted. My brain was permanently on attack mode, super defensive and just not interested in anything. I think it was by way of protection and also feeling like I had some sort of control over my condition- I didn’t want people telling me what to do with my body, even if they knew best in this situation. It was a really bizarre place to be in mentally, and as time has gone on, I’m a little more receptive to advice and things people say, but if I’m having a bad mh day or symptoms day, I can’t deal with people telling me how to manage myself. My doctors have said it’s all part of the process of acceptance.
One thing that still stands out and affects my mental health is no one says or has said ‘get well soon’. It seems obvious why no one would say that, but when you’re the ill person, it’s really weird not hearing that, because your reality is you will never get well, you are ill for life. That is such a huge thing to process and something that has been bothering me as I approach my 1 year Diaversary on April 4th; I’m still ill, there’s been no change for the better. While I have noticed some change in my mental state for the better, ultimately I’m still in this position. For healthy people, when you’re unwell and you have a cold, even when you feel utterly rubbish, there’s that knowledge that it’ll go away, it makes it seem that bit more manageable. I don’t have that anymore and I’m still
not used to it.
The mental health resources within the NHS are extremely stretched, and with diabetes MH support, there is next to nothing. In my local area, the diabetes psychologist has recently been having to fight for her job to remain. It’s left many patients such as myself, without adequate or accessible mental health care to support our diabetes. There needs to be more action from our government but also from type 1 patients, more advocacy because the change begins with us. We’re the ones facing this every day for the rest of our lives, and so we should be able to set the tone for change.
As of right now, I am very much in the grieving period still. I have phases of upset, anger, burnout, where I just feel so overwhelmed with it all- how can this be my life forever? Sometimes I convince myself that I am not sick and it was all a dream. Diabetics have an average of 65,000 injections in their life time, I don’t want that! Some days it’s completely consuming and I can’t do anything except sit there and wait for it to pass. Other days I just cry, and cry. Then I’ll be completely on cloud 9 but my body won’t let me function and it takes a toll. Diabetic distress is very real and a huge problem. People are overcome with the stress of literally acting as a pancreas and it is a breeding ground for mental problems.
It’s the constant daily battle, the mental capacity and lack thereof to just live life, let alone acting as a vital organ 24/7. People just don’t understand, they think it’s injecting some insulin here and there, pricking your finger every once in a while and then you are fine. There’s so much more to it than that! There’s a stigma that we’re trying to break down, to get rid of the taboo towards diabetes, it’s hard work but I think we will get there!
The grief and denial is probably the hardest thing to overcome because it’s as if your brain is fully aware of each and is trying to deal with both at the same time, while also reacting and responding to everything else.
Type One is relentless and you have to fight all day every day. I just hope and strive for better understanding and better care for people with the illness. I’m aware what I’ve said may come across all doom and gloom; I don’t ever sugar coat this illness (pun kinda-not really- intended) I just keep it as real as I can. I see on Instagram people being extremely positive about type 1, which in many ways I think good for them; it’s hard to find positivity in such dark circumstances, and I find it where I can. But also I know that it’s not all rainbows and happiness, it’s not a true reflection and is why there is such a lack of proper knowledge about T1.
Putting into words how difficult this disease is, was an interesting experience; especially when you bring mental health into the mix! It’s all so complex and each person’s experience with it is wildly different, despite it being the same illness.
I am so grateful for this opportunity to share my experience and my story, when I first got diagnosed I couldn’t imagine talking about T1 in this way and so that is huge for me. Here’s to more advocacy and to paving the way for a more informed and educated discourse about type 1 diabetes.”