“I personally wish that my diabetes healthcare professionals had asked me how are you going more often. Not how are your blood sugar levels going. Not how is your diet and exercise going. Not how are the number of hypos you are having every week going, either. A new diagnosis is a huge thing to deal with. A little empathy and understanding would have gone a long way in helping me to acknowledge that sometimes it might be okay not to be okay.”
On Monday evening, the attendees at #DX2Melbourne took part in a live webcast discussing the emotional, psychological and mental elements of living with diabetes. The panel was joined by psychologist Lisa Robins, who has experience in diabetes clinical psychology. I was actually thrilled for the opportunity to address this topic at an event of this scale.
Again, I am only relaying what I heard and talked about as honestly as I can recall…
It was quite interesting to hear one member of the panel comment that during earlier times he thought he was doing okay, but looking back on his journey today he has second thoughts. I actually feel the same way. I never thought that it was okay not to be okay, or to consider the impact that type 1 diabetes can have on my mental and emotional wellbeing. Today, I have no hesitation in saying that I felt isolated, emotional, not very well supported and in hiding from my condition.
Who was offered psychological support when they were diagnosed? A quick show of hands from the panel indicated two or three out of eleven. I shared with the panel that I was visited by a social worker in hospital. At the time, I felt relieved to feel normal and energetic once again. I felt that she was pressing for something that wasn’t there. However, how great would it have been if she had:
- Taken my word that I was fine.
- Highlighted some of the symptoms that I might expect further down the road.
- Pointed me to what other people with diabetes are doing to feel well with diabetes – weekly OzDOC chats, Twitter accounts, closed Facebook groups, forums, in person meet ups and peer support.
- Left me her card if I did feel that I needed that professional support.
17 year old me would likely have still ignored it, but I digress…
How do we best approach the issue of mental health? It’s something many of us prefer to stay silent about, and treated like its something to be ashamed of. A lot of us like to prove that we are stronger than diabetes, and in doing so we might ignore our vulnerabilities.
The consensus from the panel was that our healthcare professionals don’t take the time to simply ask “how are you going?” in reference to emotional health. The panel suggested that we need to normalise psychological support within diabetes, building it into our annual checklist with our eyes and bloodwork and feet. I’d also add changing the word ‘health’ in mental health to ‘wellbeing’ or ‘wellness.’
I was also thrilled to hear other panel members praising informal peer support. One panel member shared that in the absence of psychological support, it was peer support that had aided her mental wellbeing for so long.
Personally, online communities were the first form of connection I had to anyone else with diabetes. There is so much knowledge out there that helped me to become better engaged in my diabetes management. Those communities were my bridge to finding in person peer support, both of which help me to maintain relatively good emotional wellbeing today.
Touching on the stigma from healthcare professionals associated with online communities, panel members commented that it was more accessible, and no different from going to a coffee shop. One gem was that online communities complement, rather than replace psychological support.
Diabetes burnout was the next topic, and the panel pondered ways of how we identify those triggers that might suggest we need to take a step further.
I did ask Lisa how well she thought our healthcare professionals would be able to pick up those triggers and refer to adequate support. She was very confident, especially in reference to a GP. My personal view is that the right healthcare professional would be able to identify those triggers, so it’s definitely important to shop around and have healthcare professionals on your team that are meeting your needs.
Instead of trying to fix everything, one gem from a panel member was to instead focus on one element that you can fix. When I’m feeling burned out I might turn off my phone for 12 hours, go outside to ease my mind or go to bed early so that I feel more rested. Take small steps.
Another panel member talked about diabetes as extra years thanks to modern medicine, and all of the wonderful things she’s been around to experience.
Without a doubt, this was the highlight of my time at DX2Melbourne, and a topic that really did need to be discussed. The live webcast will be available on demand in a couple of days, once the camera crew (yes, there was a crew filming us) processes it all together. I will keep you posted.
If you’re in Perth and would like to connect with other type 1s and learn more about mental health in a supportive environment, then I highly recommend that you come along to this event on Thursday, August 24.
Disclosures: Abbott covered my travel expenses from Perth to attend #DX2Melbourne. I was put up at The Blackman Hotel on Monday evening, and was fed and watered across the duration of the event. There was a lovely goodie bag with a FreeStyle Libre reader, two sensors and some branded stationery. There was no expectation that I would participate in this webcast if I did not wish to, nor was there any expectation that I would blog about the event at all!
Monday, May 3 2010
It was the first week of May 2010. A warm May, from memory. My head was buried in uni assignments and a part time job, with my 18th birthday looming just a few weeks away.
In an attempt to make some kind of headway with those assignments, I decided to skip uni for a few days. I was never the kind of person who could smash out a 2,000 word paper the night before it was due. There were at least three or four separate papers I had to write, each in need of ten credible journal references. This meant hours and hours of reading through painfully long and boring PDF documents. I needed all the time I could give myself, because I knew I would be working later in the week.
Being left to my own devices in an empty house was a recipe for procrastination. Over the course of three days there were many Facebook sessions, browsing breaks, and heading to the kitchen for a drink. In fact, the latter seemed to be happening more often than I was normally inclined. A glass of soft drink was over no sooner than I had poured the glass. Even plain water, which I found unpalatable, was tempting.
Try as I might, I just couldn’t seem to find the energy to focus on those papers I had to write. I felt rather tired and lousy. Rightfully so, given I had just wasted away three whole days doing next to nothing.
Thursday, May 6 2010
I really didn’t want to get out of bed. My mouth was ever so dry, and I felt really lethargic. Feeling the shame of a very unproductive three days, I forced myself up out of bed. Thinking I had to snap out of my rut, I prepared a super healthy lunch to take to work. A salad sandwich, Ski yoghurt and carrot sticks.
The energy to remain standing on my own two feet at work that day was lacking. I might have lasted half an hour, at best, before I gave in and went home.
I wasn’t even sure I’d be able to drive myself home. Although tempted to call Mum and Dad, I knew they were out and didn’t want to interrupt their errand. It took every last ounce of my energy to drive myself back home. No sooner than I had walked through the door, I collapsed onto the couch and buried myself under the comfort of a blanket.
When my parents arrived home, I told them that I wanted to go see a doctor. Mum relayed to me that the earliest available appointment to see our family doctor was Saturday, and I knew I simply couldn’t wait until then.
We visited a medical centre later that morning. After explaining my symptoms of exhaustion and excessive thirst, the doctor sent me home requesting bed rest and hot fluids for three days.
I spent the next three days in bed, which speaks volumes for me. Never in my life had I stayed in bed when I was unwell. Sick days were often spent eating Mum’s chicken noodle soup, reading a book or watching the midday movie surrounded by tissues.
My mouth was now stripped of all of it’s saliva. I was struggling to find any food even remotely appealing, much to Mum’s distress (eat something!). I questioned my diet and lack of interest in physical activity, truly under the belief that these symptoms were of my own doing.
Sunday, May 9 2010
It was very early on a Sunday morning. Mothers Day, to be exact. I was restless, and had gravitated from my now uncomfortable bed to the living room couch. Ice cold, refreshing drinks were now a craving. These cravings were becoming insatiable, and more frequent. I was struggling to pass the mere minutes in between refreshing glasses of ice cold Orange Juice on the rocks.
In the kitchen, I was frantically trying to get ice cubes out of the tray and into the Snow Cone machine. I was onto my third or fourth orange juice granita when my rumblings in the kitchen got Mum out of bed.
“What are you doing? The doctor told you to have hot drinks!”
My heart rate was becoming more rapid by the minute, and I was going to the toilet at least once every hour. A bout of nausea finally made me feel slightly better, and got me settled that night.
When I woke up a few hours later, I was panting. My heart rate was extremely rapid and I felt breathless. I was still extremely thirsty and exhausted, and going to the toilet every hour. I told Mum and Dad how I felt, just waiting for them to suggest what I was thinking.
No sooner than Dad had started talking about going to a doctor, I shot it down. I knew that it would be pointless, and that I couldn’t hold out for that long. My mind was made up. I had to go to hospital.
The car ride was a blur. I was panting the whole time, eagerly staring out the window the way Scruffy does on the way to the park. I had no idea what was wrong with me, or if I would ever have my salivary glands restored. Honestly, then and there, I wasn’t even sure that I would survive this.
Soon enough, I would learn that my pancreas had stopped producing insulin, the hormone that regulates blood sugar levels, through no fault of my own. I would become dependent on insulin injections and frequent blood glucose monitoring with finger sticks for the rest of my life.
I was diagnosed with a condition called type 1 diabetes, the minute I walked through the emergency room door.
It’s National Diabetes Week here in Australia, and the reality is that many individuals and healthcare professionals aren’t aware of the symptoms of type 1 diabetes. Case in point. Had these symptoms been properly diagnosed when I first visited the doctor, my hospital admission may well have been avoided. I’m sharing this story today, with the hope that it might stop another person from going through the same ordeal as me.
I was lucky enough to be featured on the very awesome Diabetes Mine over the weekend, if you haven’t already caught up. I’d like to think my article also serves as a timely awareness piece for Australian National Diabetes Week, which kicked off yesterday.
So, is it somewhat easier being diagnosed with diabetes as an adult? Or would you rather be diagnosed at a younger age, where you won’t know life any differently? It’s one of the age old debates within the diabetes community.
I don’t subscribe to the notion that there is an easier option. Every diagnosis, at every stage of life, is uniquely challenging. While I’m certainly grateful for my adolescent years that were free from diabetes, receiving a type 1 diagnosis as a young adult presented it’s own set of challenges. Herein lies my story.
“I’m one of the privileged few who joined the “diagnosed-a-few-weeks-before-turning-18 club,” in terms of living with type 1. That was in 2010, and I was in the midst of a big transitional change in my life: had newfound independence, was midway into my first semester at university, was enthusiastically working my first real job, and driving around in my first car. There was a lot going on at the time, and when that T1 diagnosis came along, I don’t remember actually processing the meaning of my new illness all that much right away.
Needless to say, being diagnosed with T1D as a young adult presented a unique set of challenges.
For starters, nobody knew that I had diabetes. I didn’t grow up with it, didn’t go through school with it, and it wasn’t simply there for the world to see. I didn’t know life any other way, and went from carelessy eating potato crisps after school to having to think about what they would do to my blood sugar.”
I know I’m going to need an extra coffee today…
I can feel the goosebumps on my neck as I type those two words out.
In some ways, it feels like only yesterday that I didn’t know a world without type 1 diabetes.
In other ways, it feels like a lifetime.
Type 1 diabetes is undoubtedly the biggest challenge life has thrown my way.
Trying to mimic a healthy, working pancreas is no easy feat. Trying to cover carbohydrates with insulin. Trying to keep my blood sugar levels between 4 and 8 mmol/L as often as possible. Trying to make choices that will help me to live a long and healthy life. All while trying to live some sort of a life at the same time.
There’s a lot of trying, if you hadn’t guessed that much already.
As much as I’d like to call myself a superhero and say that diabetes doesn’t get the better of me, it does. When you choose to give something a go, you open yourself up to the possibility of failure. When you choose to open a door, you run the risk of exposing all of your flaws.
Diabetes is demanding. It requires constant attention. It drains me, mentally and emotionally. Every single decision I make through the day has an impact on my diabetes. I feel waves of guilt and emotion course through my veins, from a decision as stupid as eating a piece of chocolate. Diabetes doesn’t stop demanding of me, even at the lowest of times where all I want to do is shut the door and throw in the towel. There are still times where I do feel different, limited or alone because of this stupid condition I was dealt with.
But when you give something a go, you also open yourself up to the possibility of flying.
Starting on insulin pump therapy last May was a huge leap, that ultimately helped me to refocus on my diabetes management and reduce the highs and lows. Having access to continuous glucose data through the FreeStyle Libre flash monitor overwhelmed me at first, but I’ve since learned how to best utilise the data from it. Starting a blog was a little nerve wracking at first, but it’s since made me more passionate and open about diabetes, and led me to some amazing advocacy opportunities.
As a wise person once said, it’s better to try and fail, than to not try at all.
As I celebrate my seventh diaversary today, those are the words I am choosing to live by.
Because there sure is life after a diabetes diagnosis.