Sunday, May 17, 2015

Labelling the Change

No matter where we are in life, change happens. Life shifts like sand. Never the same one day, as we move into the next. A diabetes diagnosis is like a rip tide. One day you are standing on firm ground, and then everything shifts - everything you thought you knew, is different. Life is full of changes - a best friend moves away, a family member dies, a new baby, a move, and a diabetes diagnosis. 

Good or bad, change happens. Good or bad, our lives are impacted by change. 

I thought I had experienced it all - a doctor who declared I would die an early death from kidney disease if I ate low carb to a hygienist who was hesitant to clean my teeth because my blood sugar might be too high (it wasn't). People have offered me advice with good intentions to help - from organic foods I should eat to cleansings to rid myself of the toxins that must have made me this way. 

It is all rooted in misconceptions, which are fed by media. The media has labelled me as Diabetic, and by extension, people who want to help, also label me. It's not who I am, and whatever they are offering is based on misinformation. So I educate. I share what I know about living with diabetes. I continue to do my best, and I don't worry about it. 

But when these labels feed the medical community, this is where things go too far, and change must happen. Today's story is about The Wound Clinic. 

What an awful name. The Wound Clinic. It even sounds nasty.  

Even the thought of going there for my infected toe made me feel uncomfortable. In my minds eye, I imagined terrible oozing wounds. Certainly my toe seemed insignificant. 

This Wound Clinic is part of a large teaching hospital. Residents, interns and students spend terms there and learn whatever there is to learn about such treatments. I was interviewed by more than one of the residents, each with their agenda of finding out something about my situation. So far so good. However, when The Doctor arrived, the world shifted. My role shifted from Jamie, The Patient With An Infected Toe (which isn't great, by the way) to The Patient Who Presents With An Infection In Her Left Great Toe. As the presentation wore on, The Doctor offered Her Observations, and The Residents listened with great interest, I became Invisible. I had an Infected Toe, and all in the room listened to The Doctor, and whatever wisdom She offered. 

When I finally dared to ask a question of The Doctor, She scoffed, and told me "of COURSE you have neuropathy! You are Diabetic."  So now not only was I Invisible, I was now Diabetic too. 

This was the defining moment. I also became The Victim. I was the Victim of the attitudes in the place that was supposed to help me. Everything I thought I was - nice, friendly, mother, community member running a Little Free Library, diabetes advocate, and yes, I've lived a quite successful life with type 1 diabetes - it meant nothing. In a heartbeat everything shifted. I became a Victim. I was labelled by those who knew nothing about me.

This needs to change. 

If our medical professionals - whoever they are - doctors, nurses, interns, medical students, dieticians, dentists, retinologists, or even our institutions are going to help us, they must first drop the labels, whatever the label might be. For the label does not define the person they are treating. They bring knowledge and expertise to the patient. I may be the patient, but I am first and foremost, Jamie who has a Life Out in the Real World. 

Talk to me. Call me by name. Look me in the eye. And never EVER be judge me, or worse, scoff at me. If I need information, then give me that information. For that new knowledge will empower me, to perhaps make changes in my life, or help me to reset my expectations. 

It has taken me several months to figure it out - to get some clarity about what happened that day, and to rise above that appointment. I was devastated. I was insulted and offended. 

You may ask, why didn't you say something at the time? Why didn't you tell the doctor how you wanted to be treated. Why did you let yourself be The Victim? 

Fair question. The simple answer - I was blindsided. I had never been in such an environment where I was so Invisible. As I was trying to process what was happening, I felt like I couldn't say anything. It was oppressive. It was bigger than me. I was Victim. All my emotions were dangerously close to the surface and I felt powerless to do anything about it. 

But it's going to be different next time, for there will be no next time. I've played and replayed the scenes in my head. Next time I will recognize the signs. I will not be too intimidated to speak out. I will insist on being spoken to, not about. I will be called by name, my questions will be answered, respectfully and patiently. 

I have decided that I will not be The Victim anymore. If that means I have to speak out, or even leave the room, I will do that. 

I am part of the Change. 

I realize now, that it is my responsibility to change. And if I change, I can help others to change. By changing my attitude, I can share what I'm feeling, to help others see the change they need to make. Or I can choose to leave them behind. It is my choice. It is my responsibility. 

We define our labels in life - wife, mother, hard worker, lover of furballs, librarian - whatever it is, it is our choice. But that does not give others the right to assign labels to use that do not define us by our medical conditions. We are all human and we need to be mindful of our actions and our words. But where it's necessary, we need to take matters into our own hands and help that happen. 

It seems like such a basic thing, so let's start to make changes. 

Do unto others as you would have others do unto you.
[Matthew 7:12]

We have the power to change our attitudes and our behaviours. We can support the changes that are going on around us, just as funding brings research into new horizons, previously unimagined, like the Artificial Pancreas project or other new technologies. 

We can make a choice - to participate, support a family member, or any one of our T1D friends who are also making a choice to support the JDRF. We can do it many ways, including supporting, or even participating in the TELUS Walk to Cure Diabetes

No matter where you live, the JDRF is working to support you, or those you love and care for who live with diabetes. Look up your DRF chapter and find out what they are doing, to make living life with diabetes just a bit better for all of us. 

This Walk raises critical funds for research focused on curing, treating and better preventing Diabetes. I am all about that! 

And is it a fit? I'll let you figure that part out, and I'll just continue writing, and hope what I share with you here gives you something to reflect on. 


  1. Good advice to anyone, diabetic or not. Too bad your Doctor(s) can't read this! Unfortunately, 'next time' is never quite the same; one can still be blind-sided. Just be ready for 'em!

    1. I didn't give any feedback, not even to my endo. Our relationship is in a very good place right now, and I didn't want to colour that with negative feedback, or to be translated somehow into I'm being negative, that I decided to just deal with things differently if that ever comes up again (and hopefully not!)

  2. Well said and what a horrible experience. I like to think that I would have said something, but my guess is that I still would have been dismissed and then would have glowered in silence.

    1. Always better to get angry - and glower - even if saying nothing. I was so immobilized, I didn't get angry until afterwards. I was a mess. But when I did get angry, only then did I decide that things needed to change.

  3. Wow, I'm so sorry that happened to you. I found this to be a very moving post; thank you for sharing

    1. Thank you, Kelley. In some small way I'm glad I had this experience. It was horrible, and I wouldn't wish it on anyone. But if it can help someone get some perspective, that makes it all worthwhile.