Do you need to walk a mile in their shoes?

I was at a diabetes event put on by myself and my partner with our Diabetes Wellbeing Services the other day and had a realisation – It does not matter how much you think a health care professional understands, no matter how caring they are, how well you know them,  how wonderful they are in their passion and work for people with diabetes – they don’t truly understand what life with diabetes is like.

Now this may seem simple, obvious, an “of course” kind of thing. However having worked with some amazing people over the past decade who are really passionate about the wellbeing of people living with diabetes, I had come to presume they were on the same page as me. To some degree this is true, but what transpired on this night reminded me that there are things abut life with diabetes that you can not learn from a book. You can not learn from having an in depth conversation with a person who does live with diabetes. You can not learn from doing a PhD. Does this matter? Perhaps not. But maybe it means we still need to hear a lot more from people with diabetes and their families and not so much from those who tell us how people with diabetes “should” manage their diabetes and their lives.

The event was “Perspectives on Pumping” – my idea was that health care professionals usually put themselves up as “experts” and talk to each other at seminars and conferences with great certainty about what it is really like to live with diabetes. At our event we put the people on pumps up as the “expert panel” to tell the health care professionals and pharmaceutical reps, what it is really like to go on a pump. This had amazing outcomes. One woman, who was new to selling blood glucose meters and has zero previous experience of diabetes, ended up in tears after listening to people on pumps and their parents talking about their pump as their “life line”, the stress, anxiety and sadness of diabetes, as well as the drive and energy they have to live healthy and happy lives. She tells me it took her 4 days to recover from the evening and that she had been in the camp of thinking diabetes just needed healthy eating and exercise and “she’ll be right mate”…..What an amazing introduction for her to a diabetes event.

Other moments were listening to the passion of the health care professionals and how much they want to make life easier for the people they see. How much they fear “doing the wrong thing” and want the relationship between health care professional and person with diabetes to be a true partnership – with both having rights and responsibilities.The biggest revelation for me came when my partner told me the next day she had never thought about the Pump as being a person’s “lifeline”. She and another colleague who are some of the most amazing diabetes educators I have met and truly tuned into the wellbeing of life with diabetes – had never thought about it like this………wow…..

I wondered what they had thought the relationship with your pump is like then? I imagine they just see it as a piece of technology to assist people with diabetes to get the best outcomes. Maybe I need to ask them this question. As a Pumper my relationship with my Pump is very personal. And I often feel reliant on technology for my life and can feel anxiety about what would happen if things broke down, especially when I am far from home.

Even when health care professionals listen to people with diabetes voices, such as listening the stories told by people living with diabetes and sharing this – the fact remains that true understanding comes only from experience. Even then I question whether we can ever really know anybody but ourselves as it is only our own personal experiences and mind that we can most truly connect with.

Does this mean you can not be a brilliant diabetes health care professional if you don’t live with diabetes? I don’t think so. But I do think we need to have more of these events, where people living with diabetes, their families, health care professionals and the pharmaceutical industry sit and talk. Really talk, listen and share. It can only be good, for all of us,

Helen

6 Comments

  1. inhistiming on March 27, 2012 at 10:38 am

    I think it would be especially great for the people living with diabetes to hear from their families about how it makes/has made them feel over the years to see their parent/spouse/sibling struggle with this disease. And also to watch them choose NOT to change their eating habits, exercise habits, etc. You are absolutely correct, I will never truly understand what has been like to live as my mom for the 40-some years she has had diabetes. However, she will never really understand what it was like to be her daughter, watching her health decline, eating herself almost to death…..the helplessness. Thankfully, she has been on a 3-year-long weight-loss journey and has lost close to 100 pounds. It has made a world of difference for her, but she and I both fear what will happen if she ever goes back. Thank you for this post. I enjoyed reading it, and I hope you will get to put on many more events such as the one about which you wrote.

    • Helen Edwards on March 27, 2012 at 12:30 pm

      thanks for your insightful comments. That is so true and we have many people in counselling who are parents and partners, as well as adult children of people with diabetes who are choosing to manage their health in a way that is distressing to those around them who can see that they are not healthy and often, not happy. We most definitely include families in our counselling and groups – hope your mum has a better journey from here 🙂

  2. Kristin Barton Cuthriell on March 27, 2012 at 11:36 am

    Wow. Great Post!

  3. Cass on March 29, 2012 at 1:53 pm

    I agree – great post and incredibly awesome idea for a diabetes event – wouldn’t it be great if all diabetes-related company reps etc attended something like this when they started out?

    … and perhaps government policy-makers who still class some of the new technologies (like CGMs) as ‘luxuries’ to keep them off the PBS!

    • Helen Edwards on March 29, 2012 at 2:50 pm

      thanks Cass – great idea! We should try to develop some sort of model for this 🙂

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