Diabetes is one of those things that many people think they know everything about, yet they actually know so little…it is probably similar in some other situations, but I am not so sure. For example, I would never presume to know all about Cancer, or Epilepsy or Lupus. I would never speak to someone who told me they had one of these conditions, in a condescending way, or say that just looking at a donut had given me the condition, in a meme on Facebook. I would never tell them it was their own fault….Yet in diabetes all of these things and more, happen on a regular basis. Case in point, I was recently at a blogging mastermind and one of the “experts” was at our table, working through our ideas for our communities and businesses. When I told my story about diabetes work and blogging, he was interested and seemed to know a little about health based businesses and blogs. However at the end of his chat to me, he turned to point at a soft drink can on the table (the OTHER side of the table in front of another person who was drinking it) and said “is that drink diabetic approved?!” in a funny way, as if it was a joke…somehow related to the fact I have type 1 diabetes. Now that morning I had been having a terrible time with my blood glucose, leaving our apartment where we were staying with a level of 15 mmol and arriving with it going up, not down, to 18 mmol. I was supposed to facilitate at our table but had to change my insulin pump site and then manage my levels to try and get them down, all while working on a mastermind…I was like the classic duck paddling like hell under the water while nobody else knew what I was dealing with. I was able to step out of facilitating thanks to the kindess of the organisers. This comment was so out of line, so damaging, so seemingly innocent but deeply offensive. My reply? “EVERYTHING is diabetic approved”. I am sure it went over his head. He was clearly sure he knows everything about diabetes.
A good friend of mine Carly, who is a blogger, writer, speaker and appearance avctivist, has a visible disability. She challenges people’s thinking about what it’s like to have a visibly different appearance. We had a discussion about this incident and the fact that people have an immediate reaction to her face, often asking rude and innapropriate questions and discriminating against her. For those of us with a hidden condition like diabetes, this is not always immediate, but once people know you have diabetes, these kinds of comments and stigma arise quite quickly and it becomes a similar experience.
So how do you deal with that? I think there are a few ways – one is to become very angry and just shout at the person, which in my experience gets you nowhere fast – whether online or in real life (although you may feel better!). Another is to ignore them altogether, which can work in protecting you from further hurt. But one of the best ways is to try and educate them in the moment, about what life with diabetes really is like and how their comments affect you. Because let’s face it, we didn’t know much about diabetes ourselves until we got it. Sometimes I can manage to take time to do that, other times I do not have the energy or caring to do so. At the end of the day it is your personal choice as to how you respond.
I asked our community for your thoughts and here is what some of you said about how to handle this and how to tell someone who does not have diabetes, what life is really like.
The question – if you could say one thing to someone who has never met anyone with diabetes before and you wanted to make sure they totally get it – what would you say to them?
“You have to carry a heavy, awkward parcel for the rest of your life and no matter how many other of life’s parcels you have to carry and juggle, you ALWAYS have the heavy awkward one needing attention as well. ( taken from “The Parcel” written anonymously)”.
“It doesn’t ever get easier you just get better at dealing with it!!”.
“Type 1 Diabetes messes with your head …as well as your body, and people who don’t have it, don’t get it. Being a family of type 1’s myself and two of my 3 children, diabetes is a topic of conversation most days of our lives, and it can be hard to stay positive 24/7”.
“Diabetes is about so much more than just managing insulin and food. For me it’s affected my eyes, nerves, fertility and mental health. Sometimes even spot on management can still see high sugars or crashing lows – you can only do the best you can to try and take care of yourself”.
“It’s hard but you can do it, going out is hard but it can be done, just think about it first”.
“Diabetes is not prejudiced, sexist or racist – it can affect anyone”.
“I know I have diabetes! And yes I can have that piece of cake!”.
“Diabetes is not a death sentence. It should not place restrictions on what you do. Take it as being part of you. Do whatever you want to do in life but always ensure that you prepare yourself well in advance. Know the pitfalls and handle it appropriately.”.
“The difference between type 1 diabetes and type 2 diabetes is like having a broken arm and an amputation. They both mean you can’t lift weights, but for different reasons”.
“I’ve lived with diabetes for 36 years and had incredible adventures and continue to live an amazing life. Diabetes has made it harder but never stopped me living my dreams”.
“Yes I hate it and it gives me the shits, every day….it is so goddamned hard, but I don’t want anybody to ever say no you can’t do that because you have diabetes”.
“Type 1 is a silent disease. Yes I may look like there’s nothing wrong but 9/10 times that’s not true. Please don’t presume it’s “under control”. There’s no such thing”.
“I have had over 11000 finger stick tests and over 14000 injections of life saving insulin. Every day I am in charge of keeping myself alive ! Yet I have no medical degree. I have been doing this for seven years – and I am only 17!”.
“My son was diagnosed with type 1 diabetes at age 7 & has experienced many difficulties with control & has had many hospital visits over the past 28 yrs …I get so angry & annoyed by people’s ignorance regarding diabetes….Like the idea people think that he must have acquired it by eating too much sugar or products with it …It’s infuriating that people really have know idea what it is or the complications with your sight, heart, kidneys, nervous system, healing of breaks, scars & cuts, infections, possible amputations – all taking so much longer than that of a non diabetic, which all come with having a chronic illness such as diabetes that messes with your life daily. Then there’s the high blood glucose readings & the lows, that affects not only judgements but feeling weak & like crap every time they occur ….And then those that don’t know that type 1 requires insulin injections because the person’s Pancreas doesn’t produce its own.. And that type 2 is generally adult onset that doesn’t always require insulin but can be controlled with tablet, diet & exercise. Diabetes can be very debilitating & it infuriates me that people do not understand the severity of it or the impact it has on the person struggling with it daily. And I agree Diabetes Sucks especially for the people living with it & juggling daily to try to keep it under control which isn’t always easy”.
“Type 2 Diabetes isn’t always just about diet and lifestyle”.
“Diabetes is like balancing a set of scales. Sometime you need sugar to balance and sometimes you have too much sugar and need insulin to remove some so you balance”.
“I hate it when people assume you have it all under control and it’s not that hard because you look healthy and happy. If only they knew the everyday struggles and how much effort you put into just surviving one day…”.
“Diabetes means you are in control of your day everyday and everything in moderation for Type 1”.
“Day to day dealings with Diabetes are never the same, No matter how hard you work on your management you will never get the same BSL reading twice in one day”.
“We won’t die if we eat something sweet! Get so annoyed when people make comments at work when a cake is brought in, such as ‘that looks like diabetes on a plate’. Diabetes is not caused by one cake!!”.
“Sugar does not give you diabetes!”.
“It’s a battle every day to keep everything “under” control”.<
“I can’t control it going up and down but I have to deal with it as best I can 24/7”.
“Diabetes is a word, not a death sentence. Live a healthy life around it. But remember to live your life”.
“Diabetes requires careful attention, every second of every minute of every day, to ensure that your sugar levels are not too high or too low – and no matter how careful you are they change. Its not that I didn’t eat the right thing – it could be the weather or my emotions or getting sick”.
“It’s not due to lifestyle choices, some/most had no choice at all”.
“No, my daughter’s type 1 diabetes is not ‘under control’ or more ‘stable’ now”.
“It’s funny how when you have an autoimmune disease, your normal is everybody else’s awful. I wouldn’t wish this on anybody”.
“I stopped listening when they said that diet could cure my type 1 diabetes”.
“In response to people who say they could never inject themselves – ah yes, you could inject yourself if it was a choice between life or death!”.
“It’s a curse…that is all”.
“It’s so much more than not eating sugar! Diabetes is so complex. It’s not the same each day. Another point everyone asks “did you get diabetes cause you ate too much sugar” nope that’s not the reason…”.
“Some people pump weights. I pump insulin”.
“Please don’t judge people with any type of diabetes. Coping with it is the hardest thing I have ever done in my life!”.
“Diet and exercise won’t cure me, there is no cure for any type of diabetes, just healthy management”.
Wow.. what an amazing range of comments and so powerful. I love this diabetes community. Do you have any to add, what would you say?