HCPs

Pieces of the Emotional Support Puzzle

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I’ve written a great deal about the need for more “emotional” support from diabetes healthcare professionals.

In my humble experience, I often felt a lack of emotional support from my endocrinologist and my doctor. 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, which you can read about here. Meanwhile, my general practitioner often told me that “my sugar levels are too high” without actually offering anything more substantial or helpful.

I’m amazed at the amount of “smart” comments that I receive, with suggestions that I should find a counsellor every time write about these issues. Comments like these always leave me second guessing myself. Am I too vulnerable? Over emotional? An attention seeker? A basket case? A person who shouldn’t be blogging?

So, it was really fantastic to see that psychologist Marisa Hilliard dedicated a session at the World Diabetes Congress in Vancouver last week to this very issue: diabetes healthcare professionals prioritising emotional wellbeing. I was also honoured that this post of mine was quoted in her presentation.

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.

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, Gwen, who has my undivided attention during every 60 minute session I have with her. I have my family at home, whom I have a newfound appreciation for in my diabetes care. I know that they are cheering me on every step of the way, even if they don’t have diabetes themselves.

I’ve also discovered the amazing Diabetes Online Community through blogging this year, who have come through for me in more ways than you would imagine. I can tweet something at 2am in the morning and instantly receive words of encouragement and advice. I have the wonderful Oz Diabetes Online Community who I can hang out with on Twitter every Tuesday night. I look forward to my coffee break every single morning, when I can sit back and check in with the Diabetes Online Community on Twitter.

I also have all of you who cheer me on through your support of this blog.

A year ago, I certainly felt very alone with my diabetes.

Finding emotional wellbeing has helped me to embrace it.

Type 1 Writes at the World Diabetes Congress!

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Last week at the World Diabetes Congress in Vancouver, psychologist Marisa Hilliard kindly quoted one of my blog posts in her presentation about prioritising emotional wellbeing from diabetes healthcare professionals.

One of my OzDOC friends Kim, who was at the conference, kindly tweeted one of Marisa’s presentation slides to me on Saturday morning.

My words sounded familiar, but I couldn’t put a mental finger to the exact post that this quote belonged to. I turned to Dr. Google, and who fetched for me a post from July titled “I Don’t Feel Like I’m Doing Enough.”

I have extremely mixed feelings towards this post. This was the very last post that I expected to be quoted. This post was extremely difficult for me to write. I wrote it on a day where I didn’t feel in a very good place with my diabetes management. It was one of my lowest points this year.

But after some deliberation, I decided that I am proud of this post. I’m proud of how transparent I was that day. I’m proud of how writing this post helped me to identify what I needed to find in order to manage my diabetes. I’m proud that I did share a vulnerable moment, because life with diabetes isn’t always smooth sailing. I’m proud of the fact that this post inspired a presentation advocating for emotional support towards people with diabetes.

Initially, I wanted to bury this post and forget about it.

Today, I proudly repost my words from July. (And tomorrow, I’ll weigh in on emotional support from diabetes healthcare professionals).

I’ve been stuck in a rut for a while. My hba1c levels are okay, I guess, but they’re not great either. And they’ve been stuck in that good, but not great phase for a long time. And right now, I just can’t stop thinking about this tweet from last week.

I have a love hate relationship with my doctor. I love how he can quickly dismiss my concerns when I’m not feeling well. But I hate that I don’t feel that anything constructive comes from seeing him. Every single visit usually goes the same way. He’ll tell me that my illness is “just a virus,” send me for a blood test and then tell me “you need to get your sugar levels down.” I’ll nod my head. I might even manage to mumble an “okay.” He’s usually running an hour behind, and I’ll be lucky to get five minutes in there before I’m pushed out the door. I know he’s not a diabetes expert, but it’s not like he even tries to offer any sort of genuine help.

Then there’s the endocrinologist. An endocrinologist appointment really does motivate me to do better with my diabetes. And I can talk to the endo, if its someone I’m comfortable with. But I don’t get to see them as often as I probably need to right now. If I’m lucky, I’ll get to see them twice a year. And if I’m extremely lucky, I’ll get to see the same endo both times. I’m due for an appointment right about now. In fact, I could really use an endocrinologist appointment right about now. And out of the whole six months that my appointment could have been scheduled for, it just had to be in the two weeks that I was on holidays. And now, the earliest I can reschedule for is January. January, for heaven’s sake. Being in the public health system can be so frustrating sometimes.

And I just can’t stop thinking about that tweet. I think there’s a good reason I wrote it. I need to try harder to find the support I was calling for in that Tweet. It’s well and truly time for me to get back on track. I’ve had my break. Perhaps too long of a break. I’ve had a lot of fun and enjoyed a lot of good food. And now, it’s time for me to hit that reset button that comes after a good break.

Normally, I would have accepted that wait until January for an endocrinologist appointment. Normally, I would make those excuses about work and life and being busy. But today, I’m going to give my Diabetes Clinic a call and see if there are any cancellations that have come up. And I’m going to make more time for diabetes. Because right now, I don’t feel like I’m doing enough. And right now, I want to feel better about myself.

“You Should Be Making Your Appointments Outside of Work Hours.”

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“You should be making your appointments outside of work hours” is something that I was recently told.

What a lot of people in my life don’t realise is that I have diabetes. There is a lot of work that goes on behind the scenes that you don’t see. Insulin injections, piles and piles of used test strips stuffed into the pocket of my meter, and countless bags of jellybeans that have been begrudgingly stuffed into my mouth over the years (except for the black ones).

I see specialists who assist me to manage my condition. Endocrinologists, diabetes educators, and dieticians to name a few. Then there are other issues that must be closely monitored by professionals including optometrists and podiatrists. All of these specialists are in short supply. These specialists have long waiting lists of patients, often spanning several clinics or places of work.

Which brings me to last week. I found myself in need of a consultation with my diabetes educator. Factoring in her volume of patients, Christmas break, and her annual leave that will not be replaced at the clinic, the earliest appointment available was February. Possibly even March. That’s an extremely long wait for an issue that I am dealing with right now. An issue that I want to work through and get past as soon as possible.

I wish managing diabetes was as easy as ringing the doctor to make an appointment after work. I wish that I was able to select the most convenient time of my day or night to see one of these specialists. But it’s not that simple.

I actively chased up a cancellation appointment with my diabetes educator this week, so I could have this issue sorted as soon as possible. I was not thinking about how it would interfere with my other commitments. Because getting this issue sorted is what will ensure that I will continue to be able to manage the other commitments around me to the best of my ability.

I am very proud of the fact that for the better part, I don’t let diabetes interfere with the other commitments in my life. I don’t make diabetes anyone else’s problem. Many people don’t realise, or remember that I have diabetes when I bring it up. That just shows how good I am at it.

I think that all of the benefits that come from my continued, healthy existence far outweighs an occasional inconvenience. Just saying.

Finding My Voice Inside, and Outside of the #DOC

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One hundred posts ago, I knew nothing about diabetes beyond my own ability to live with and manage it. I was diagnosed at an age where I was able to manage diabetes independently, and didn’t need to impose what I believed to be a burden on my family.

My Mum accompanied me to all of my hospital clinic appointments and diabetes education sessions during the first year after my diagnosis. But once that first year was over and my appointments became less frequent, I began to shut my Mum out too. She would ask me how my blood sugar levels were going from time to time, and I would give vague answers. I made sure to reply in a way that she would notice bothered me. I didn’t want to talk about diabetes. I didn’t want to tell her that my numbers were imperfect. I didn’t want her to worry. And most of all, I didn’t want to impose that burden of diabetes on anyone else but myself.

I barely knew anyone with diabetes in real life. I didn’t have anyone who actually “gets” it. Every time I tried to explain diabetes to someone, I felt like I was trapped in a bubble and my voice was coming out muffled on the outside.

My doctor would always tell me “you need to get your blood sugar levels down.” He never showed a shred of understanding to what I was going through. He never asked me how I was. Or how I was coping.

Sometimes keeping diabetes to myself felt like the easier option. That was, until this blog came along. That was, until the Diabetes Online Community came into my life.

This blog has given me a voice, and a space to express those feelings that I kept to myself for so long. It’s ignited an interest, and a passion for diabetes advocacy that I never knew existed.

If there’s a conversation happening in the real world, I feel more confident to add my diabetes perspective to it. If something interesting has happened, I’ll happily bring it up at the dinner table. And most of all, I feel so motivated to write and to share here every day. Have I become the person who shouts diabetes to the world at every opportunity? No. But this blog has definitely given me the confidence to talk diabetes much more in my real life than I ever have in the past.

It’s also given me a whole community of other people with diabetes that I never knew existed. A community that motivates and inspires me every day. A community that has given me a cushion of support to soften my landing during times where I feel like I’m falling. A Diabetes Online Community that I’m so proud to be a part of.

Today marks the one hundreth post on this blog, and I really can’t thank you enough. For reading, for supporting and for accepting me into this wonderful community. Each day I want to pinch myself because it doesn’t feel real. I will be forever grateful to have found it.

One hundred posts ago, I felt alone with my diabetes. Today, I feel fulfilled.

I have found my voice, and I’m here to stay.

Here’s to a hundred more.

Be Realistic, But Don’t Settle for Satisfactory

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How do you feel about a hba1c target of 6.5%? Chatter among the #DOC this week has been circling the new NICE (National Institute for Health and Care Excellence) guidelines for people with diabetes in the UK. I initially felt quite reactive to this like many others on social media, however some rational thinking has softened my view.

In Australia, I’ve always been told that I should strive for a hba1c of between 6 and 7%. That hasn’t changed in the 5 years that I’ve lived with diabetes. During that time, my hba1c has plummeted due to frequent hypoglycemia, it has gone up due to burnouts and it’s also fallen within the satisfactory range. And I can tell you from experience that a satisfactory hba1c level is extremely difficult to maintain while trying to live an active and ever changing life.

My main concern about this suggested target is that each and every person with diabetes is different. And we all have our own unique circumstances surrounding our diabetes. There are children, teenagers and adults living with diabetes. Some of us are newly diagnosed, while others have been living with it for several years. Some of us have a parent or carer to help us manage diabetes, while others do it on their own. Some of us are content with where we are at, while others are fine tuning and making room for improvement.

So, in that respect, a stock standard number for the masses is certainly not a one size fits all approach. That number will be easily achieveable for some, and completely unrealistic for others. That number is going to set some up for success after success, and others up for repeated failure. And while a number is a great means of motivation and goal setting, it isn’t always a true reflection of the hard work and effort we’ve put in to managing our diabetes.

On the other side of the argument, Mike at Everyday Ups and Downs points out that the lower target is a way of encouraging us not to settle for something satisfactory. I’ve been really excited at seeing borderline acceptable hba1c levels in the past, only to be told by doctor’s that it should be lower. My response at the time was more than dismissive, but looking back at it today, I finally get it. I should strive for a lower number if it’s a realistic goal for me, as it will further reduce my risk of complications in the future.

Mike also suggests the 6.5% target is a way of making doctors more comfortable with seeing lower hba1c numbers in patients. It’s news to me, but apparently some non-hypoglycemic patients are told that their hba1c levels are too low. Crazy!

So, what do I think of all of this? Don’t pay too much attention to what’s in the media or to others. Set your own goals that cater to you and your diabetes situation. Make them realistic. Have a team of people around to cheer you along. Take some time to relish an achievement, and then move the goalpost a little further back. And remember that nothing is impossible if you put your mind to it.

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