Type 1 Diabetes, Body Image and Language.

One thing that became very apparent to me when I was at the Body Image Workshop in Chicago with Marci Evans and Fiona Sutherland, was just how much we (RD’s, Therapists, Humans in general) need to work body image into the discussion with clients.  This got me thinking.  Not only does it need to be part of the discussion when working with clients with eating disorders, it needs to be part of the discussion when we are talking to clients in any context.  I think body image work needs to start being considered and perhaps even implemented in various settings.  I think about how diet or wellness culture is so pervasive.  We hear body talk almost constantly everyday- whether in direct conversations, on television shows (do we even call them that anymore if they are made for Netflix random thought), on the radio, in print ads and all over every platform of social media.  That constant inundation of diet or negative body talk can only be highlighted when they get diagnosed with a disease where the body become front and centre. 

Today I want to talk about type 1 diabetes and body image.  I worked in an exclusively type 1 facility for 8 years.  I watched these amazing families work with a disease that is highly unpredictable and very scary.  I also spent those 8 years wondering if what I was teaching to help each child diagnosed survive and grow would harm their body image.  Carbohydrate counting is very important for matching insulin doses to food however this puts a huge focus on carbs.  Kids and teens (my area) could easily link the need to take an insulin shot with the intake of carbs.  No carbs-No shot.  No matter how inclusive of all foods you are as a practitioner or a parent there is still an incredible emphasis on foods.  An individual with type 1 diabetes is recommended to give their rapid acting insulin approximately 15 minutes prior to eating.  This may not seem like such a big deal to some but what we are asking this individual to do is decide how many carbohydrates they are going to eat at that meal- no more no less- (unless they want to give a second shot to cover a second plate or they are on an insulin pump which is a bit different)  In doing this we are eliminating the ability to listen to internal cues- because there could be very dire outcomes if you give insulin for carbohydrates you decide not eat.  It is just another way we are teaching them not to trust their bodies.  And if you look at it from the lens that they probably already feel that way due to having a disease where their bodies “attacked” their pancreas. 

All this and we haven’t even scratched the surface on bodies.  So this topic is going to be a mini series of blog posts that can be read individually or together-this post will be on language around bodies, followed by eating and insulin and lastly diabulimia.  There are many things I wish I could have done better or changed more for my clients in my time at the diabetes centre.  I was still navigating my way around HAES™ in an environment that was not an eating disorder facility and in retrospect wish I had done more to change the diabetes universe (realizing just recently that I still could do this)  however I do think I made some changes or planted some seeds that were helpful and I want to share them with you.  Even if you do not work in diabetes I think that this might trigger some thoughts about your own work.

Language.  If you have read this blog before you know that I am very interested in language and how it lands on the receiver.  Especially how we talk about bodies.  At diagnosis, a kid or teenager will likely lose a fairly significant amount of body weight.  This is due to the physiological effect of starvation.  The body has stopped or is not making enough insulin and therefore the individual’s glucose is not getting to the cells for energy.  This will cause the body to breakdown muscle and fat for energy and will put the body into ketosis.  Due to not having enough insulin in the body to rid the body of the ketones many people will be diagnosed with Type 1 Diabetes when they are in or close to Diabetic Ketoacidosis.  These individuals are also often dehydrated as their bodies have been working to get the glucose out of the bloodstream via urine.  Therefore increased thirst and increased urine output.  All this to say that most bodies are much smaller at diagnosis then they were even a few months ago.  And it is at this point we need to be very aware of what we are saying.

Insulin needs to be injected subcutaneously, meaning into the fat tissue.  Imagine being newly diagnosed with a disease that you do not understand but learning your medicine needs to go into fat and often times these individuals will be told that they are so tiny right now(at diagnosis) that is it hard to find a spot to give the insulin.  In a culture that praises thinness this can be viewed as the best compliment.  Being so thin that it is hard to find a spot to inject.  If a child has been living in a larger body for a while this could be seen as ultimate accomplishment.  This is where I think the language around injections needs to be considered.  I do not think that practionners should be saying “ you can put this injection anywhere you can pinch an inch” or “we will use your butt as it has some good padding” or “ see this chub right here this is a perfect spot to inject”.  I wonder if we actually teach the kids (or parents depending on the age of the kid) what the layer under their skin actually is and why it is there.  What if we got really radical and called it your adipose tissue or the layer of fat under the skin.  By using cutsey names for fat we are again increasing the power of the actual word “fat”. 

The other talking point at diagnosis is weight.  As I mentioned there is often a decrease in adipose and muscle tissue prior to diagnosis which is then followed by an increase once insulin is initiated.  Clients are then often weighed every few days to assess that the insulin is working.  This is where I think education could happen such as talk about set point theory or even something as simple as what is actually being weighed on the scale.  I have personally found many kids and teens surprised to hear that when they are being weighed after diagnosis it helps the educators see that they are becoming more hydrated and getting more muscles.  That the scale tells you nothing about you or your health most times but in this instance it tells me water and glucose are staying in your body.  For whatever reason (DIET CULTURE!!) many kids think that the only thing a scale tells you is how fat you are.  Not how much your bones weigh, or how much the poop in your colon ways (a huge hit with the 6-10yr old crowd) In full honesty, I “forgot” to weigh people quite often but if a doctor demanded a weight I was sure to educate while doing it.  And I do think this helped.  Because as I will talk about in the third part of this series people learn very quickly at diagnosis no insulin=decrease of weight.  Which can then lead to purging by omitting insulin or Diabulimia as it is often referred to. 

Just imagine all this then you now have to live with a chronic disease that requires you to inject yourself daily-often in your abdomen, buttocks or possibly legs.  Well aren’t these every teenagers favourite body parts (yes, even boys the often forgotten group when speaking about body image).  In a social media world where these body parts are glorified when thin and smooth, it can be very difficult to constantly “pinch an inch” to give insulin.  Every 3 months (standard appointment spacing where I live) the diabetes team will ask to see these “sites” and check that they are not “lumpy”.  Again, imagine how this feels.  Imagine having multiple eyes on your midsection when you are already self-conscious.  I think this is why the continued dialogue around body image is so important.  Educators should be asking how clients feel about having so much focus on certain body parts.  We should be asking how this factoring into their self-talk about their bodies.  We should be asking how their bodies are being perceived at home.  I have often wondered if because of the nature of diabetes and the fear parents have, if those living with diabetes feel like their body is never truly their own.  I wonder this because there can be so many people involved in their management. 

Finally, gold standard care for a child living with Type 1 diabetes in Canada is that they see their specialist doctor every 3 months and as part of this routine checkup they are weighed.  I have seen parents standing at the scale ready to record the weight.  I have seen doctors comment on how much a kid is up over the course of the last 3 months.  I have seen kids panic before stepping on the scale. Again to be honest I always did blind weights.  I got very good at measuring a height and a weight at the same time.  Now I wish I had pushed back a bit more and questioned why.  We as a clinic stopped weighing teenage girls as frequently but I think it should have been for all ages and all genders.  My thought behind this is, why make weight such a key thing every 3 months.  Why should it be as important as HgBA1c or a meter download.  Because it’s not.  The weight tells me nothing of kids health.  What taking a scale weight did tell me however, is how much of a focus is on weight in a particular house, but I am not sure that most people will pick up on that information.  When you see a parent panic about the weight on a scale please take that as a sign that there will likely be diet talk (or healthy lifestyle change dressed up in diet talk) in the house. 

Watching how we phrase things regarding diabetes management can go a long way to helping protect our clients from poor body image.  And if you still struggle with these ideas try it yourself.  Be a client in a clinic appointment.  Get weighed in front of the team.  Show everyone your abdomen.  Show everyone your blood sugars and let them guess on your food intake and exercise (next post!) and then rate your body image.  How do you feel?  Now image being a teenager with a changing body and a disease you struggle with.  How do you feel about yourself now?

Until next time be unapologetically you, while I be unapologetically me