When my son was diagnosed a lot of people told me that exact same comment, never knew how to interpret the comment. Today I think I
AT LEAST IT’S NOT CANCER…
WRITTEN BY: Liz Gilmore
Old news
“You have diabetes? At least it’s not cancer!”
I don’t think I can count the number of times this statement has been the reaction to me disclosing that I have diabetes. At first, I used to be stunned. My jaw would drop and I would be in disbelief. Because what I heard was, “At least you don’t have a serious disease/health condition.” When the person would leave, I would think about what I should have said in response. I would be mad that they’d think anyone would rather have Type 1 than another severe illness. Or I’d interpret their statement as if they were saying, “At least it’s not that bad.”
As time passed and my length of time with diabetes grew longer, my strategies to address this ignorance has evolved. I’ve asked the person to explain what they think diabetes is and what it is that I have to do to live with diabetes. I’ve asked the person to name a person in “remission” from diabetes. The person would usually backtrack or sometimes even argue that it was disgusting that I would think my diabetes was as bad as cancer. And looking back I would have to agree with them and I’ll explain why a little later…
No big deal
Just recently, I was in a career development course and we were discussing our book during class. The teacher, who I really like, asked if anyone had critiques about the book. I said something along the lines of not appreciating the author’s take on health and how they assume we can make changes in our lives to make ourselves health “full” by making different choices. I explained that for me, my health would never be at “full” because I have diabetes. My teacher then said, “I agree with you 100%. And in my case, I have a severe chronic illness…” And honestly, I didn’t hear the end of what she said. All my energy went towards not getting upset that she had automatically assumed that her illness was worse than mine. I kept hearing the word “severe” in my head. She doesn’t think diabetes is severe ? She thinks diabetes is no big deal?!
I then turned my focus back to class and heard my instructor continue, “… I’m going to share with you all what my health condition is because you’ll find out sooner or later: I have stage IV lung cancer.” My mind did not know how to feel in that moment. My mind attempted to hierarchy our illnesses and I stopped it. I was quiet the rest of the class. I cannot even tell you what we learned in class because I was too caught up in my own thoughts and asking questions myself like, “Is there a health hierarchy?” I started thinking about my grandma who died from liver cancer. Would I dare try to compare her experience to what I go through? No. That’s disgusting and awful. I started crying in my car on the way home from class. Why had I started to do that in my mind? Why did I automatically make it a competition in my mind? I felt awful and didn’t understand why my brain started down that route to begin with.
Why this road?
After some introspection, I realized it’s not that I want to be seen AS sick as someone fighting cancer, but it’s that I want the acknowledgement that my disease is serious in the first place. And I think my mind became framed to try and establish a hierarchy of illness because of the statements like the title of this piece. What I really want from someone who says, “At least its not cancer” is to acknowledge that:
- I have taken 40,000 shots since age 11.
- I have not had a good night sleep in 19 years.
- I have to stop everything I do to address a low blood sugar or I literally die.
- If my blood sugar gets too high, then my blood becomes acidic and my organs start shutting down.
- I’m hooked to a machine 24/7 and as far as I can tell, I always will be.
- It’s not exactly sexy to have sex while hooked to a machine.
- I worry every day that my son will develop Type 1 diabetes and have to live like me.
- Both Type 1 diabetics I personally knew growing are dead and they both died before age 46.
- I go to bed every night not knowing if I will wake up.
Not enough
I think my desire to have people acknowledge my illness as serious stems from the public’s overwhelming misunderstanding of what it’s like to have diabetes. In the United States, diabetes is often a punch line to a bad joke. Diabetes is seen as something that is caused by poor choices taken by the individual whom has it and therefore it is deserved. We equate a person’s secondary complications from diabetes as punishments for not caring about themselves. It feels more and more like in order for people to care in our society we have to have dramatic music, lots of action, everyone up in arms about a subject.
I’ve come to realize that diabetes will never be “dramatic” enough in our current culture for people to equate as serious. And that’s because diabetes chips away at us a little every day over a long period of time. And if or when we start to have complications (in some cases no matter how much efforts we put it) we hear things like “they should have taken better care of themselves.” As a society, we do not take diabetes as being serious because all of the mental, physical and emotional workload is invisible and then if/when diabetes is visibly serious, we blame the individual. And as much as I try and as much as I want people to know what my experience as a Type 1 diabetic is like, they can’t know because it’s not their experience. Just like I don’t know what it’s like to have cancer.
Liz Gilmore is 31 years old and lives in the United States with her fiancé Doug, nine-month-old son, and her fat cat named Nevaeh. She’s getting married this fall, which also marks 20 years of Type 1 for her.