I have a secret. I feel like a fraud living with diabetes. Healthcare professionals are constantly telling me that my diabetes is too “well-managed”, or that my A1c is reflective of a person without diabetes or that I’m a “boring patient”. Is it even possible to have imposter syndrome when it comes to life with diabetes?
We know that my type of diabetes is slightly different to the norm. Technically classed as type 1b, my diabetes doesn’t seem to be an autoimmune condition and my pancreas is still producing residual amounts of insulin. I believe that this protects me from getting DKA (pure speculation here). It’s the best of a bad situation.
I worry about taking an ableist view of living with diabetes when I talk about it. Everyone’s diabetes and their journeys are different. While some are able to complete ultra marathons in spite of diabetes, others view diabetes as disabling with how disruptive it is to their lives. I am also acutely aware of the privilege I have of being able to access subsidised insulin, insulin pump consumables and CGM (for now) and afford private health insurance (barely) to get an insulin pump. These technology are what helps me to keep my diabetes in check. Without it, I might not be that “boring patient” who is so “well-controlled”, it’s like I don’t have diabetes.
On the other hand, it has taken a long time to get to this point with years of self-advocacy, tears and frustration under my belt. I’ve had healthcare professionals tell me I’m in denial when I’ve tried to advocate for myself and ask questions. I’ve been tangled in red tape simply because our healthcare system allocates funding and resources based on a nice little tick box diagnosis rather than medical needs. I’m just one of the lucky ones who found light at the end of the tunnel through lots of peer support, trial and error, patience and resilience.
But I think I’ve reached the point where my story has been told to death. Now I feel like quietly checking my privilege and stepping aside. There are so many other stories from people with diabetes who are doing amazing things, navigating their own challenges and who are fabulous story tellers. I see my role now as trying to amplify their voices to keep the slow burn of diabetes advocacy going. And in part, it’s been great see this happening organically and connect with fresh faced diabetes advocates within the community. It’s time for me to let go.
2 thoughts on “Checking my Privilege”
Ashley, I think you get to do whatever you wish with advocacy. I am also privileged, more by age than an economic privilege. I advocate for my grandchildren and their children’s children. I know my mom advocated for my future when I did not have diabetes. But now that I have had it for 48 years, I know her tiny difference means the world to me.
That’s beautiful Rick and reminds that every drop in the ocean creates a ripple effect. Thank you. I think I’m ready to change the way I do advocacy, I just don’t know how/in what way that would look like. I’d love to keep finding, supporting and amplifying the new stories that emerge through the community.