Diabetes Australia had their national diabetes week from the 11th - 17th July with the theme Diabetes Stigma.
It was an amazing campaign! About a month or more before the launch they asked for people to share their experiences of stigma with them and the result was a series of social media posts plus well produced videos using the words of people with diabetes. It embodied the #NothingAboutUsWithoutUs ethos. If you missed it it’s worth looking up the hashtag #EndDiabetesStigma or visiting this website.
My experiences of diabetes related stigma
When I saw the call for stories of diabetes stigma, I didn’t think I had any experiences to share: I’ve never been asked to take in insulin in a bathroom or anything like that, so I felt I had very little experience of diabetes related stigma. However, when I was viewing the live facebook event I started to think about one or two specific times where I felt stigmatised and the more I started to reflect the longer the list got. So here’s a few of my personal experiences of diabetes stigma over my 28 years of diabetes.
Can/should you eat that?
Is there a person with diabetes in the world who hasn’t been on the receiving end of this comment/question? This question has been asked of me a lot over the years from all places but the place it “irks” me the most is at family gatherings, which thankfully hasn’t happened in a very long time (even before C#v%^).
Do you have the “bad” diabetes?
I can remember only one time where I was asked this and it was a friend of a friend but it was also a nurse so I was really taken aback at the time. I did react in a condescending manner so I’m not sure I used the opportunity as well as I could have. I’m sure there will be a next time and I’ll do better (sigh).
“I wondered why you look like you do”
Even though this happened about twenty years ago but really still “irks” me. It was in response to me sharing that I have diabetes at a family gathering. At the time, I had just met this person and wasn’t comfortable asking what they meant and I’m sure at this point they don’t remember.
In Healthcare Settings
There have been many more incidences of diabetes stigma in my interactions with healthcare professionals and I have to say this is usually more upsetting because this is the place I’m supposed to feel understood and, well, the word “healthcare” has the word “care” in it but doesn’t necessarily mean that you feel cared for.
Do you still take insulin?
I was asked at one of my annual foot checks with the podiatry clinic if I still took insulin. I laughed out loud in their face, I didn’t mean to but honestly, if this is a question on the form could we also have diabetes type on the form also???
Do you check your glucose levels yourself or does your GP?
This was also asked at a podiatry appointment and I honestly can’t fathom why this question would be relevant, other than for a study that I’m not aware of.
“Women with diabetes have higher risks of miscarriages, etc”
I really didn’t need to hear this right after I my very traumatic late miscarriage even though my mental distraught state was looking for the answer to why this had happened to me. However, I am so very, very, very grateful that my super supportive endocrinologist and specialist OB GYN got to me with their personalised advice that I did everything I could to protect this baby but it just wasn’t meant to be, before this doctor chose to impart this nugget.
“Your HbA1c is 7.0 mmol and the Doctor says you have to do better”
This was the message relayed to me from my doctor through the secretary but there was no discussion as to how I could do better. I’ve written about this before which you can view here if you want more of the detail. I’m grateful that I was in a position at that point in my life where I knew I was doing everything possible to do better and that the problem wasn’t me and once I got my insulin pump I changed doctors.
The next phone call with my lab results started out the same as this one but when I was asked by the secretary if I wanted to schedule my next appointment I replied “No thanks!' It felt sooooo GOOD!!!
Driver’s License 3-year renewal
As a person who uses glucose lowering medication I am required to renew my driving license every three years instead of ten like most people. This would have less of a sting to it if I didn’t also have to pay two and a half times more than a non-diabetes person to renew. The fee for people who are required to renew annually has been removed so why not reduce the three year fee again to compensate for having to pay a GP to complete the medical form required.
I’m so very grateful to Diabetes Australia for choosing this theme to highlight the “widespread community misunderstanding and stigma about diabetes” and how it contributes to “high rates of mental health problems for people living with diabetes” and to start a campaign to end diabetes Stigma.