What Does Diabetes FEEL Like?

It feels incredibly permanent. It’s only been with me for the past seven and a half years, and yet I struggle to remember a life without it.

It feels incredibly monotonous. Checking my blood sugar. Weighing my lunch on the kitchen scales. Looking up carb counts on my iPhone. Pulling out my pump to give an insulin dose. Checking my blood sugar again. Pulling out my pump to glance at the insulin on board feature. Deliberating over a correction dose. It’s pretty hard to muster the enthusiasm to do the same thing over and over each day.

It feels extremely isolating. The twinges of jealousy that surface as I watch others my age who can live like there’s no tomorrow. Wondering if anyone around me can truly comprehend the burden of my condition.

It feels incredibly frustrating. One day can be perfect, while the next can be a complete trainwreck. I can do exactly the same thing that I did yesterday, and get a completely different result today. I can make a decision that makes complete sense on paper, and then stare at the result in disbelief.

It feels utterly exhausting. The physical and mental effort that this condition demands is huge, that there are days where I am left struggling to give my 100% to everything else.

It feels incredibly worrisome. Pushing thoughts to the back of my mind about what my future will look like. Wondering if I am doing enough today to ensure that I will live a healthy and complication free life.

It feels painful. Stabbing the tips of my already blistered fingers. Sticking a gigantic needle into my stomach to insert a new infusion site. Feeling the sting of insulin going into an overused area of skin tissue.

It feels ever so emotional. The journey from high to low and everything inbetween can be an emotional rollercoaster. It’s so hard not to let the numbers get to me.

It feels immensely guilt ridden. Pangs of guilt accompany every single decision I make that has an undesired outcome on my blood sugar.

It feels extremely disruptive. It doesn’t care if I’m trying to work, if I’m trying to sleep, or if I’m trying to chill on the weekend.

It feels incredibly close. Finding my tribe, who I can turn to when I’m having a shit day. Finding folks in the Diabetes Online Community, who I can reach out to at 3 in the morning while I’m waiting out a low blood sugar. Being able to hear the two most powerful words in the english language. ‘Me too.’ Making my world feel that much smaller.

It feels experienced. Every passing day arms me with that little bit more knowledge, that leaves me better equipped to deal with this condition. Like finding another piece in an incredibly difficult jigsaw puzzle.

It feels confident. Confidence to speak up for what I want from my healthcare professionals. Being my own advocate. Sharing what I feel passionate about. Finding my comfort zone when my condition has thrust me far from it.

It feels grateful. Grateful that thanks to modern medicine, tools and technology, my life has a far brighter outlook than it did a century ago.

It feels lucky. Lucky that I live in a country where insulin, test strips, pump consumables and healthcare won’t send me broke. That I have a supportive family and a job which affords me these privileges.

It also feels incredibly heartbreaking. Heartbreaking that in this day and age, people are still can’t access the basic tools and healthcare that they need to survive. Heartbreaking that these tools of survival are tied to income and extremely costly insurance premiums. Heartbreaking that without the subsidies I am afforded, these tools are extremely costly. Heartbreaking that people are still dying in some parts of the world because they cannot get their hands on the luxuries that I take for granted.

Prioritising Emotional Wellbeing in Diabetes Care

How many healthcare professionals ask you “how are you going” during an appointment?

Not how are your numbers going.

Or how your diet is going.

Or, how are the number of hypos you are having each week going.

When I say ‘how are you going,’ I mean ‘how are YOU going?’

I must admit that I was surprised in hearing psychologist Lisa Robbins express confidence in the abilities of diabetes healthcare professionals to identify burnout triggers, during our live webcast at DX2Melbourne. It’s my view that the right healthcare professional would be able to identify those triggers.

In my humble experience, I often felt a lack of emotional support from my endocrinologist and my doctor in my early days of type 1. I never felt that they had the time for me on a busy clinic day, and I didn’t really feel too important when there were younger children and families around who understandably required more attention.

It was often hard to open up and be honest with them for fear of judgement. My very first endocrinologist told me that I had very poor control, just weeks after my diagnosis. Meanwhile, my general practitioner often told me that “my sugar levels are too high” without actually offering anything more substantial or helpful.

For the record, I certainly don’t expect that an endocrinologist or general practitioner should have to fill the role of a counsellor. They are qualified professionals in high demand. No doubt they have far better things to do with their time than listen to me blubber on about my diabetes.

However, I do expect that health care professionals will listen to me. I do expect that health care professionals will make me feel comfortable to open up to them. I do expect that health care professionals will look beyond what’s written on the charts and talk to me about what’s going on. I expect that health care professionals will show some empathy during consultations. And I expect that healthcare professionals will offer support and encouragement.

This is not a big ask. This can be done. Even on a busy clinic day. Even when time is limited. Even if you’re meeting me for the first time. Even if you are a general practitioner who is not a diabetes expert. Nobody has to be qualified to be supportive and empathetic, in my opinion. Above all, prioritising emotional wellbeing will assist diabetes healthcare professionals to better address the need for any further psychological support.

Emotional wellbeing helps me to see value in my diabetes healthcare team. It encourages me to continue to manage my diabetes to the best of my ability. A good experience motivates me to keep in touch with my diabetes healthcare professionals and to ensure I have my regular checkups. Above all, emotional well being has helped me to prioritise my health. It’s the difference between walking out of the doc’s office holding back tears, or with the biggest grin that I can’t wipe off my face.

Obviously, my endocrinologist and general practitioner are only individual pieces of the “emotional” support puzzle in my diabetes care. I have my wonderful diabetes educator, who has my undivided attention during every 60 minute session I have with her. I have my family at home, whom I have learned to lean on a little. There’s the wonderful Oz Diabetes Online Community, who I can hang out with on Twitter every Tuesday night. I have my soapbox right here at Type 1 Writes, where I can vent about any topic of my choosing. I also have some amazing d-peeps who I am lucky enough to call friends.

Three years ago, I certainly felt very alone with my diabetes.

Finding emotional wellbeing has helped me to embrace it.

Diabetes Disruptions

Last night’s OzDOC chat on diabetes disruptions really put my mind to work. I can’t say that I think of diabetes as being disruptive all that often. Yet as I began to answer some of the chat questions, it became pretty clear to me that it was. Diabetes is disruptive. It’s disruptive to my day, it’s disruptive to my mindset and it’s disruptive to the people around me.

One disruption that easily comes to mind is the time I have previously wasted, obsessing over what I need to bring with me every time I leave the house. I tend to overthink things quite a bit, especially with the more time that I have up my sleeve.

How long will I be gone? How far away from home will I be? Am I going to be comfortable at the party with all of this crap weighing me down? Do I really need all the stuff I have brought with me?

I’ll spend far too much time tucking things into pockets and jackets, only to pull them out once again. Thankfully I now have my grey marle pencil case, with all my travel gear ready to go every time I head out.

Another disruption that comes to mind is the people around me. I am too nice of a person. While I don’t particularly feel the need to explain myself, I do feel conscious of the fact that I might not be polite to others. Like trying to find the right moment to excuse myself and walk away from someone who is talking to me.

Then there are days where diabetes puts a damper on my mood. Or I’m not having the best day, and having to deal with diabetes on top of it simply makes it worse. I’m more quiet, withdrawn, and probably don’t do my best at explaining this to the people around me. But I feel ridden with guilt for it afterwards.

I’m also really conscious of the perception toward diabetes that I’m feeding to others through my actions. I don’t want people to think that I’m ill or unwell. I’m quick to deflect people’s looks of pity with confident explanation of what I do to myself to manage. Okay, cutting the queue at Pathology yesterday probably didn’t help my cause, but you can’t live with this lousy condition without the occasional perk…

The one disruption that I would easily wish away is a low blood sugar. Correcting a high is easy enough. I’m pretty confident in my ability to keep tabs on pump failures and ketones. Yet a nasty low is enough to knock me sideways. It frustrates me that I can’t even go for a walk around the block without having to worry about going low.

While diabetes will continue to be disruptive in every which way that it pleases, always remember that you most certainly are not.