At least it’s not cancer…


#1

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.


#2

Hello Mila,

I read your post and agree with you that people just don’t understand the time, effort and discipline it takes to manage and love with diabetes. I too have had people tell me that at least it’s not cancer. I respond, “I agree at least it’s not cancer but it’s still very challenging and exhausting to manage diabetes 24/7. Life is tough enough without the constant things we have to do to stay healthy.” You should take my diabetes for a day and then we can talk.”


#3

To each his own. I do not want to get a dangerous form of cancer. Diabetes is no walk in the park, but for me, I prefer something that I can live with for many decades (I’ve already gone past 40 years) rather than knowing something I’ve got could easily kill me (in a miserable way) in a short time. Many years ago chemo was so awful that folks got violently sick from it–no thanks–I’ll stick with my diabetes paraphernalia and live my life. I don’t want to have cancer that requires radical surgery, and/or chemo(poison), or radiation (sometimes as bad as the cancer). I think years from now the medical advances will cause folks to scratch their heads that in our time we had to resort to chemo and radiation. They might regard that as barbaric, akin to bloodletting, lobotomy, mercury treatment, and electroconvulsive treatments.


#4

If my child had just been diagnosed with type 1 diabetes and someone said, “well at least it isn’t cancer,” I would have been furious and hurt that they did not understand the seriousness of the illness. I would try to correct their misunderstanding.

But as a person who has lived with type 1 diabetes for 60 yrs, I often think to myself, well at least it isn’t cancer or a slew of other dreadful diseases. I have seen worse diseases in my own immediate family. I
realize that they are dealing with so much more than I am. There are some dreadful diseases out there and I don’t consider my diabetes to be one of them.

If I was a person who did everything I could to control my blood glucose levels, and I still got complications I would think that life is completely unfair and I don’t know how I would handle it. Certainly not happily.

That is just my opinion. I would rather not have diabetes, but it is something I can live with. If someone now told me that diabetes isn’t that bad, and they didn’t have diabetes themselves, I would correct them, but I no longer need their validation.


#5

Having watched my young sister fight for three years with colon cancer and ultimately lose the battle leaving two young kids behind, I’ll happily take my diabetes, thank you. Not all cancers have such a sad outcomes, but if someone who has little experience with either makes the comparison I’ll just chalk it up to ignorance.


#6

I think most people would agree that they don’t want to get any type of cancer. Where we are now with many types of cancers, there is very good outcomes versus what it was like 20 years ago. I have many friends and family members who have beaten back cancer and are living happy, healthy lives.
But I feel the point of the article is that diabetes just doesn’t get the respect it should for being a nightmarish disease with no cure.
It is mentally draining. It is ongoing and needing constant attention. It doesn’t play fair, ever. I have seen people who have done everything in their power to manage their diabetes and they have run numbers that should have kept them safe and yet they still have more complications than anyone would have expected. Or the person who didn’t know any better back the early 60’s and 70’s ( like me and have no complications). How fair is that? If not given enough attention, it could kill you at any given moment.
I think the article is trying to make a very valid point that this disease just doesn’t get the respect or attention it should. It’s not just lose some weight or just exercise more or just take an injection of insulin and everything will be fine. It will never be fine. It is always there, always ready to give me another challenge to deal with. Just a little understanding, a little compassion. Just a little would be nice once in awhile.


#7

While I certainly understand the immediate reaction to "at least it isn’t (name any disease), the fact is that, for me at least, diabetes, while not a cakewalk (pun intended) is better than a lot of things you can have.

I’ve had high blood pressure due to a blocked renal artery for 42 years. I’ve survived two different types of cancers, although the treatment for the first one was an absolute bear and the survival rate was less than 20% (it’s been 18 years now for me). But the thing that has affected me physically and my lifestyle the most, that has no cure and no really effective treatments, is fibromyalgia. No, it’s not fatal. No, it won’t cause vascular, renal, or opthalmic problems, but it means that I haven’t had a pain-free day for over thirty years. A good day is when the pain is at a level of 1 or 2. A normal day the pain level is 3-4. And I have many bad days a month when the pain is at 5+.

No, I’m not complaining. And I have to admit, I’m glad I didn’t get D as a child, and I’m extremely lucky in that I don’t produce ketones even when high so I’ve never been in DKA (don’t even ask about lows…they’re not every day, but they’re often enough), but of all the things I’ve had or had (including a heart attack at 39 and a stroke at 62), the one thing I’d like to get rid of is fibromyalgia.

I can imagine that having someone say to you “at least it isn’t…” would sound especially dismissive if you’ve never had anything else. In my family, the saying is “at least you don’t have allergies” and we all break out in hysterics (long story).


#8

My husband has a relative who developed Type 1 as a side effect of cystic fibrosis. His parents told us that their son thinks that Type 1 is worse than cystic fibrosis. Not many people understand or have a basis to compare. Thought you might be interested.


#9

My philosophy is: “Everybody has something.”

It’s a waste of my time and energy to compare my problems to others’ problems.

It’s tempting to want sympathy, but it’s a trap.

Or to quote a very inspirational person, Cameron Haines: “Nobody cares, work harder.”


#10

Or to be a little more crude, Sympathy can easily be found between S…t and Syphi…s at any time in any dictionary.


#11

I agree. I am not looking for sympathy. Never have, never will. My parent told me this was the hand I was dealt and I have to deal with it. And I do. Everyday since 1970. Everyday with no day off. Everyday without it not running through my head. I don’t want sympathy. What I do think everyone with diabetes needs is a little understanding. Understanding how hard it can be sometimes. How many things we must juggle everyday. How even with our best efforts, things go wrong. A little understanding that no one asked for this.
Yes, everyone has things they need to deal with. We all do. And some have many things they must deal with.
And to all those people who have things they have to deal with, I have so much empathy and understanding for what they are going through. I get it. I live it. I understand. I know what it feels like to yell “why me?”.
So while at least it’s it cancer is a statement with little understanding, I realize that this is how many people think. Diabetes is not that big a deal. Just exercise more, watch what you eat, just take your insulin and it’s cured.
If only that simple.