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Choice of Words: Suffering From or Living With?

January 25, 2010

There are a lot of things about the way people discuss type 1 diabetes that annoy me. And in some cases, drive me totally bat-shit crazy. The most obvious is that I don’t like when people use the term “diabetes” to describe something that is innately type 2 only, such as “If you lose weight, you too can cure your diabetes!” or “Obesity is a leading cause of diabetes.” I don’t like when people say “You can’t eat that,” I don’t like it when people say, “Do you really have to do that here?” and I definitely don’t like it when people say, “Oh, grandmother died from diabetes.” You know, there is a reason you shouldn’t walk up to strangers puffing away on the streets going screaming “OMG SMOKING CAUSES CANCER YOU’RE GONNA DIE!!!”

Because it’s RUDE.

But what really gets me is when people talk about “diabetic sufferers.” I actually wrote a bit about this last spring, and had quite a bit of lovely feedback.

However, I have surprisingly noticed a couple of people with diabetes using this phrase, which shocked me a bit. I was thinking about this over the weekend and I’ve decided that I, personally, am not a diabetic sufferer. But I know people who are. I know people who are caused pain by diabetes day in and day out. There is definitely a select group of people who suffer because of diabetes. But there is also a large group of people who are not necessarily suffering from diabetes and I sort of resent this label that I am suffering in some way.

I am a 24 year old college graduate who successfully moved across the country, scored a gig at a top PR agency working in the fastest growing field of social media, I have a totally awesome boyfriend, I have traveled to 18 states and 3 countries, I have awesome friends, and everything else in my body is working perfectly fine after 16 years of having type 1 diabetes. Do I look like I’m suffering?

Of course, I suffer sometimes. Diabetes is a wackadoo disease that doesn’t like to sit still. It is unpredictable and annoying from minute to minute. I suffer when diabetes makes me feel physically ill. It creates emotional hurdles that are out of this world (more on that later this week…). But that’s the disease, not me. I am not wallowing away in a hospital bed waiting for my end days to come. I am part of a vibrant, active community who doesn’t sit still for an instant.

Suffering happens, but it is not a state of being.

A lot of this is semantics, I realize. It is the words in which we use to describe the exact same thing. What is suffering to one person may be living to another person, and vice verse. I am sure there are people reading this who think very well that they are suffering from diabetes, and like I said, it’s fine to think that. I am not talking about people are legitimately suffering from the effects of diabetes. But I think it is strong language to describe each and every one of us as “sufferers” because I think it paints an unnecessary negative picture of people who are living with diabetes. There is enough drama in my life without having someone treat me as a fragile doll incapable of doing anything for herself or making rational decisions about her medical care.

While I was doing a bit of googling on the term “diabetic sufferers,” I came across this post in which a man named Matt Browne stated:

Knowledgeable diabetics don’t suffer. The term “diabetes sufferers” is biased and certainly not appropriate. It creates stigmas.

I think this, in my mind, is why I don’t like the term “diabetic sufferers.” I’m perfectly willing to discuss all the drama that goes into keeping me alive. But I don’t “suffer” from the finger pricks, the multiple gadgets I carry around in my person, the lifeline tethered to my abdomen. They are not pleasant and they are downright terrible things to have to do on a daily basis, but when I’m walking down the streets of Manhattan, or I’m window-shopping in Soho, or having a coffee in the Village, I certainly don’t consider myself to be suffering. In fact, to say that I think belittles the people who actually are suffering.

Perhaps someday I will come to a point where I am suffering from diabetes. Perhaps someday I will go blind or suffering an overflow of protein in my urine because my kidney are damaged or perhaps someday the tingling I feel in my feet first thing in the morning will turn into full blown diabetic neuropathy.

Perhaps.

But until that happens, until that happens for each and everyone of us, please, I beg you, do not call me a “diabetic sufferer” unless I really am suffering. Please do not make this disease prematurely worse than it already is.

What do you think: Do you consider yourself a “diabetic sufferer?” Why or why  not?

27 Comments
  1. January 25, 2010 10:36 AM

    I hear you Allison! I think people just don’t understand in general. Maybe I’m giving them the benefit of the doubt, but I find even my family doesn’t get it. Once I school them about the truth, they almost apologize for not knowing any better. Couple the false ideas about diabetes with someone who speaks their mind without though for other people’s feelings and it is rude.

    It seems we’re getting there, but it’s baby steps. What’s also sad is that one of the reasons we are getting more public information out is because more and more people are getting diagnosed. Can you say epidemic?

    • January 25, 2010 11:04 AM

      I hate thinking of this as an epidemic, but it’s true. Thanks for sharing!

  2. Kassie permalink
    January 25, 2010 10:41 AM

    I feel that people with diabetes can call themselves whatever they want, irregardless of how it affects the general population’s terminology. We’ve earned it. For example, I personally rarely use the term ‘diabetic’ but I 100% respect the choice of those with non-functioning pancreases who embrace the ‘ic’ word.

    Some days, I do suffer. I suffer from diabetes, I suffer from highs or lows, I suffer from lousy math skills, I suffer from poor planning… it’s just a word and I long ago gave up campaigning for or against words (I suffer from thin skin, and can’t take the attacks that often follow).

    • January 25, 2010 11:04 AM

      I agree, some days I suffer too! I realize it’s just semantics (even wrote that) but I just happened to notice it the other day and I wanted to find out what other people thought. Thanks for sharing! I definitely see what you mean.

  3. January 25, 2010 11:13 AM

    I’m totally with you on this, Allison. Can’t stand that. However, on a recent day, I was suffering from diabetes. Suffering mentally, emotionally, and just flat out physically from the consequences of rollercoastering sugars. It happens. But that by no means signals that I’m a diabetic sufferer. We are Living with Diabetes, with the occasional suffering every one in a while. This one, as it turns out though, doesn’t enrage me like a recent comment on my blog – that one has me in spit-fire dragon mode at the moment… Thanks, semantics. Thank you for making me “suffer.”

    • January 25, 2010 11:17 AM

      Your comment made me realize I left out something I wanted to say: I definitely suffer when my diabetes makes me feel physically ill. I suppose my point was that I don’t suffer moment-to-moment, and the phrase just made me feel like I was supposed to be in agony all the time! That’s no way to live!

  4. January 25, 2010 11:18 AM

    I don’t feel like I suffer yet. I live w/ diabetes. And like an annoying roommate you can’t get rid of, some days it’s okay and d and I get along. Other days I just want to kick d out…but I can’t. Cause we signed a lease.😛

    • January 25, 2010 11:21 AM

      I think of diabetes more like an annoying little brother you can’t get rid of. I certainly didn’t sign a lease! Some things in life you just can’t choose, like family and chronic illnesses.

      • January 25, 2010 12:48 PM

        Ohhh, I think I like the little brother view better! You’re right, you can’t pick your family.🙂 And you can’t pick diabetes either.

  5. January 25, 2010 11:22 AM

    My daughter definitely doesn’t “suffer” from diabetes. In fact I think she is a thriving, fantastic little girl. (And this by no means implies that she accepts it 100% of the time.)

    My hang up is the words “disease” vs. “condition.”

    At diagnosis our CDE’s told us they prefer to use the term condition and I whole-heartedly agree.

    “Disease” implies illness, being sick, and degeneration. My daughter is none of these.

    Miriam Webster defines disease: a condition of the living animal or plant body or of one of its parts that impairs normal functioning and is typically manifested by distinguishing signs and symptoms : sickness, malady

    Whereas one of the definitions of condition is: a usually defective state of health

    I know it is a semantic difference, but I choose not to label my child as “sick” and having a “disease.”

    (And I also sometimes choose to use the adjective “diabetic” for brevity. So much succinct to say “diabetic child” than “child living with Type 1 diabetes.”)

    I think an important point that I learned while acquiring a minor in Women’s Studies is that when people, particularly minorities, take a negative word and claim ownership, it loses it’s negative effect on them.

    So whatever words you choose to describe your condition (or disease), own it!

  6. January 25, 2010 11:28 AM

    I am not suffering from diabetes! I personally can’t stand the word “suffering” and hate when it’s used with describing diabetes. The stigmas…grr! I take excellent care of myself and my somewhat working pancreas. Diabetes is forever changing but I’m not suffering.

    Sincerely,
    Non-suffering Diabetic

  7. January 25, 2010 11:40 AM

    As Allison noted, most of the time I d0n’t “suffer” from diabetes. But there are moments. As far as “disease” v. “disorder” v. “condition,” I find it interesting and ironic that the word “condition” falls within the Webster definition of “disease.” Our pancreas isn’t functioning normally and I would characterize blood tests, hypo and hyperglycemia, and injenctions/pumping as a typical sign/symptom associated with the D. But you’re correct: I don’t see this as a signal of any lingering or degenerative sickness, and it no way destines us to that fate. The connotation doesn’t bother me, personally, and I always do cringe about the PR of CDE’s and Endo’s who would rather say “condition” or “disorder” rather than “disease.” We are afflicted with it, and must live with it, and regardless of what it’s called, that doesn’t change. I am personally not bothered by any use of the word “disease,” but can see and understand why some would. Especially parents, who must endure this in a way we PWD don’t and have nothing but absolute hope for their children. Someone made the point above that I say is 100% on point: We Live With The D, so therefore we earn the right to call it whatever we choose to get us through the day. This includes parents and spouses, as well. We can’t do it without them.

    • January 25, 2010 11:51 AM

      Michael-

      At four my daughter innocently reached for another child’s hand. He yanked it away and proclaimed “I don’t want to catch your disease.” It was crushing for my husband to watch.

      I wrote about it here: http://www.d-mom.com/control-issues/

      So yes, I think for us choosing to say “condition” is a choice for the type of life we want her to have. A life without people thinking she is sick and contagious.

  8. January 25, 2010 12:02 PM

    Actually I don’t thing that this is that simple. First let me start by saying that when I need to tell somebody about Tristan, I never say he suffers from diabetes and I never say he lives with diabetes. Tristan is diabetic or Tristan has diabetes. Period! That’s a fact.

    Wikipedia says: The word suffering is sometimes used in the narrow sense of physical pain, but more often it refers to mental or emotional pain, or more often yet to pain in the broad sense, i.e. to any unpleasant feeling, emotion or sensation.

    I can honestly say that yes sometimes Tristan suffers from diabetes. There are days that he cries because he doesn’t want to be diabetic anymore. It’s not so much the physical aspect of it but emotionally he just doesn’t want to do it anymore.

    I’m not diabetic. But there are days that I do suffer from diabetes. Being a human pancreas for a child definitely takes a toll on a person mentally and emotionally. The cause of that “toll” is diabetes. Plain and simple.

    I think that people have different “definition” for the word suffer. I think people should use the word that they feel is more appropriate for how they are feeling today. However, having said that, I hope that Tristan never says “I suffer from diabetes” on a regular basis while referring to physical pain. Tristan is healthy. Looking at him, you would never know that he has diabetes. However, none of us can disregard what diabetes does to a person mentally and emotionally.

    Just my thoughts!🙂

    • January 25, 2010 12:24 PM

      Thank you for sharing! It definitely isn’t simple and I agree that people don’t really know what “suffering” is… It can look or feel different to different people. I like to say I’m living with diabetes, or even living despite diabetes, but the reason I like “living with” diabetes is because it’s more positive and I don’t like the idea that I’m fighting everyday to beat diabetes into the ground. That’s exhausting!

      I LOVE that you pointed out that even people without diabetes suffer. I think suffering can happen to anyone: spouses, children, friends. I definitely suffer from diabetes mentally occasionally and I’m actually going to be writing about it tomorrow!

  9. Emily permalink
    January 25, 2010 12:39 PM

    Right on. Mostly I just say “I have diabetes.” It’s kind of like the little brother metaphor you used. Even if my little brother were annoying as hell, I wouldn’t say “I’ve been suffering from my little brother for 17 years,” unless I were joking.

    I saw an expression I hadn’t seen before in a news article the other day: “Mr. Smith was 65 years old and battling diabetes.” The sentence was incidental to the rest of the article – just a little background on Mr. Smith. I’m guessing he was trying to stem some complications of diabetes? Because the point of my self-care is that diabetes doesn’t have to be a battle.

    • January 25, 2010 12:41 PM

      Oh I HATE battling or fighting or any of that. It makes it sound like someday I’m going to be it into submission and it will suddenly be gone. I can understand battling or fighting cancer, because there is a hope of overcoming it. I can’t overcome diabetes. It’s just there. But I can certainly live better with it. I don’t know… I never really understood who came up with that phrase.

      Oh, and I didn’t meant that I suffer from my family (haha), I was more commenting on Cara’s use of saying she signed a lease with diabetes. I didn’t agree to anything – diabetes was forced on me from an outside source, kind of like when you get a sibling. It’s not a choice!

  10. Tina permalink
    January 25, 2010 2:12 PM

    I do call myself a “Diabetic”. The “ic” is not a stigma inducing form of the word. I dion’t think I have ever said I “suffer” from diabetes. I think I usually say I “have” diabetes or I am a diabetic. Now of course, your post has me wondering. I will have to listen for that one, lol.

    “Knowledgeable diabetics don’t suffer.” Obviously you did not write this, you found it. It really pisses me off though. I consider myself fairly “knowledgable” but it did me no good. I have had diabetes for 16 years and I do suffer. I suffer every day of my life because of complications that I did not not cause. I hate when people assume that if you take good care of yourself you will be fine. That is not always the case with this disease.

    • January 25, 2010 2:30 PM

      Tina, I agree with your comment about Matt’s post. I didn’t really like it either, but at the same time wasn’t sure if I totally disagreed with it. I have a feeling he probably meant it different than it came across, because the rest of his statement I agree with. And like I said, there are *definitely* people who suffer from diabetes and I in no way wanted to come across saying that no one suffers from diabetes. My problem was the across the board labeling that all people with diabetes are “sufferers” because, as the comments show, that’s not always the case.

  11. January 25, 2010 11:18 PM

    I agree people can call themselves what they want but diabetic really rubs me the wrong way. I like addressing the person first, for example, children with diabetes not diabetic kids. This is a fabulous thread about how language does make a difference! Thanks Allison. P.S. Can you imagine my chagrin when my ex’s new wife stated in her Christmas letter “[my daughter’s name] sure doesn’t let her disability get in the way!” Yikes. [She was dx one day after my divorce was final!] But, one of the big digs is to get ADA accomodations such as stop the clock on those 4-6 hr tests, you have to demonstrate “disability”, which is not the case any more than generalized suffering. Stay well, all!

    • January 26, 2010 12:46 AM

      I agree that I don’t consider diabetes to be a disability any more than I consider myself to be suffering. But I AM glad that we can have accommodations made and if that’s what it takes then so be it. To me, it’s not so much a disability as it is an additional lifestyle challenge that requires certain steps in order for me to do my best job. The only thing I consider a disability is when someone actually physically cannot do something (like a person in a wheelchair is disabled). I mean, to disable means to prevent something from working (like on a computer) but that’s not what diabetes does! It just makes things more challenging.

  12. Colleen permalink
    January 26, 2010 3:45 PM

    What great insights, Allison.

    A “diabetic sufferer” is the last thing I would consider myself. At times, I of course suffer, lately more than usual in fact. But, even though these feeling of suffering have been overtaking me these last few weeks, it certainly doesn’t define me. As you aptly say, “Suffering happens, but it is not a state of being.” I wholeheartedly agree.

    Interestingly enough, I do consider myself a “sufferer” of other things… I don’t know why it’s different, but I do consider myself to be “suffering from” depression and migraines. Perhaps it has to do with the length of time I’ve dealt with them (10+ years, whereas I’ve only had T1 for 1 1/2 years), or having dealt with them since preadolescence. I’ll definitely be thinking about this.

    • January 26, 2010 4:22 PM

      I would think though that depression and migraines can actually be more debilitating and preventing you from doing more things than diabetes. For me, diabetes doesn’t stop me from doing anything, it just requires about six more steps. But I could see how depression or migraines would be physically limiting. So maybe that’s why?

  13. Carolyn Cooper permalink
    January 31, 2010 1:37 AM

    Allison, Very interesting discussion here and, although an RN, I definitely didn’t consider the semantics of Type 1 (or 2) diabetes so much until it became personal for me when my son was diagnosed 4 years ago. One of my son’s first questions at that time was, “So you’re telling me I have an incurable disease . . . ?” He was 14-years-old . . . now the whole diabetes ball of wax wasn’t put to him in those terms, but that’s what he inferred from the initial insult of the whole ordeal. I was adamant that diabetes is NOT a disease, but a condition. (That is psychologically more acceptable for me!) And as far as incurable—well, I don’t want to drift the thread, but I have my high hopes for the future (period).

    The word disease just gives me flashbacks to old black and white 1940’s era movies where the heroic main character is “SUFFERING from a disease” and it’s all so tear jerkingly sentimental that it’s almost unbearable to watch.

    As for the “suffers from” dilemma. Yuck! I don’t like that phrase either. In medical writing where dicating a patient history requires some medical jargon, I prefer “afflicted with Type 1 (or 2) diabetes.” I’m not in love with the word “afflicted” but still prefer it over “suffers from.”

    To digress (sorry), the terms Type 1 and Type 2 evolved in medical lingo from IDDM and NIDDM (insulin-dependent diabetes mellitus and Non-insulin dependent diabetes mellitus). Often type 2 patients can’t tell me offhand whether they are type 1 or type 2 (type 1’s ALWAYS know, of course)–a quick look at the type 2’s med list will certainly help me get on the right track. I really feel that Type 1 needs a more distinct name, something that captures the essence of the condition like “autoimmune dysregulation of glycemic control” or even “autoimmune diabetes.”

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