It’s OK to feel overwhelmed – by Amy
About three years ago while I was still working at Diabetes UK, I attended a conference in London where I heard some truly inspirational people talk about their experiences of diabetes and how it influenced their emotions and relationships.
One man, who by complete coincidence was also diagnosed shortly after a holiday to Barbados, was speaking of his experience of ‘Diabetes Burnout” and summed everything up in one perfect little phrase that I’ll never forget.
“Diabetes is like having a second job. Where you have to work 24 hours a day. 7 days a week. Without a break or pay. For the rest of your life.”
The things is, nobody really tells you when you are first diagnosed that it’s perfectly OK and normal to feel overwhelmed by the prospect of living with diabetes and that life as you know it, won’t ever be the same.
Never mind all the practical changes you now have to adopt – like the daily injections, carb counting, calculating insulin ratios and testing your blood glucose – you (and your family) will also experience a tidal wave of emotions which is arguably much more difficult to overcome.
For me it was a toss up between guilt and anger – not helped by the fact I was diagnosed on the cusp of puberty and already a slave to my hormones.
As mentioned previously, I come from a family of medics. Of course it is a massive advantage being surrounded by loved ones who know everything there is to know about diabetes and are excellent in a medical crisis (thank god) but like most things, it’s not that simple.
I went from an 11-year-old healthy child that never had any health complaints to being surrounded by doctors both in and outside of my family, who I felt, were judging everything I ate and scrutinising my every blood sugar. When my parents and diabetes team were just trying to encourage me to “do better”, I falsely interpreted that information as someone dictating to me how to live my life and well, “to hell with that” I thought.
Looking back I absolutely know that my family were only being loving towards me and concerned for my wellbeing, but under the thick haze of teenage angst and diabetes burnout, I
felt like I was being overbearingly suffocated. It was like my identity of “Amy. The girl that likes to sing and write” had been unceremoniously replaced with “Amy. The patient with Type One diabetes” and all I wanted to do was hide my head in the sand for some respite.
Every three months I attended my local diabetes clinic where the doctor would scan his eye down my blood glucose diary in front of my mum and mumble disapproving tones at each of the higher readings. God I hated that. It made me feel like such a failure and so utterly guilty that I couldn’t live up to the expectations of those who were trying to help me.
So I guess I buckled under the pressure of parental and professional expectations – I slowly but surely shut down my emotions. I became so anxious about the possibility of seeing a high blood glucose reading on my monitor that I simply stopped checking them. Each time my parents asked “What is your blood sugar?” before a meal, I just made one up to avoid disappointment.
While some teenagers rebel by binging on alcohol, I chose to indulge in sweets and chocolate. Just anything to show the outside world (and to convince myself) that I was no different from all my friends, that just because I had diabetes didn’t mean I had to change.
You see, the concept of identity and mortality is a very intense and complicated one for children to process and it takes time. When you are so young you like to think of yourself as invincible and you almost set out to make mistakes so you can form a sense of self.
My big mistake was not talking about my feelings and denying myself the basic right to open up to someone and say “I’m really struggling here and I need help.”
I really wanted my doctors to look beyond their medical text books and see the individual behind the patient. It’s very easy to look at crappy BG readings and say “Ok, so obviously you are not administrating the right dosage of insulin so we’ll do X, Y and Z” but I already knew all that. The root of the problem wasn’t that I wasn’t giving myself enough insulin, it was that I simply couldn’t face it anymore and I had no motivation to – I hit a wall.
It wasn’t until the first summer after my diagnosis that I realised the true importance and value of having support networks in place to help keep my emotions and diabetes in check.
I attended a Diabetes UK youth camp in Castlewellen, Co. Down where for the first time I was surrounded by kids my own age going through the same thing. Not only were we properly educated on the day-to-day management of our illness (as opposed to a few leaflets handed out to us when we were first diagnosed), but we had the chance to talk to each other about how it made us feel and enjoy each others company by doing fun, “normal” activities, such as canoeing and horse trekking.
The experience was pivotal in helping me retune my brain into thinking “I’m going to control my diabetes, it’s not going to control me” and realising that I wasn’t on my own after all. In fact, I was one of around 31,000 kids living with the condition in the UK – all trying to navigate their way safely through the diabetes minefield.
Before each meal in camp we were called up in groups to sit down with a doctor to check our blood glucose and inject. On one occasion I remember sitting down and feeling really anxious because a BG reading of 15 m/mols flashed up on my monitor. The doctor then looked me and asked, “so, what do you think of that?”
“It’s bad” I said with my head held down and eyes on the floor.
“No. it’s not bad” he replied reassuringly, “It’s high. We can get it down.”
It’s amazing how rephrasing something like that can give a completely different perspective on it.
It really wasn’t “bad”, and more importantly, I wasn’t bad for having a high reading. It was something of circumstance and in order to rectify it, it was important to remove guilt from the equation and replace it with logic. Take more insulin if your blood sugar is high, just don’t feel bad if you don’t get it right all of the time.
Don’t get me wrong, I have struggled with diabetes burnout a number of times during the last 15 years, but the most important remedy each time was to talk about the stress I was feeling and vent out my frustrations through the things I love – music and writing.
If you find yourself in a rut, the most important thing however is to always ALWAYS surround yourself with good people – whether they have diabetes or not – who care and are there to help you to get back on to your feet when you feel like hibernating.
To this day I’m still friends with the ones I met in youth camp all those years ago and have kept each of the letters we used to send to each other (before we discovered facebook).
Ironically, I have actually met so many friends through diabetes. Whether it has been via Diabetes UK, volunteering, taking part in research trials, receiving insulin pump training or DAFNE training – the support has been amazing.
However, if there isn’t anyone in your life who is going through exactly the same thing, don’t worry. Talk to your friends and family anyway, although they don’t know how it feels first hand, they will still want to help so please let them.
It’s important that the people closest to you know what to do during times of hypos and hypers and how to spot the signs of them coming on (oh I have plenty of stories tucked up my sleeve to share with you about this!).
Just don’t bottle your feelings up and remember that everything is still achievable. Diabetes should never hold you back in life and if anything it’ll actually make you a better and stronger person in the long run – trust me, I’m a diabetic!