Recently a friend of mine suggested that I volunteer at a Cancer ward to know what real pain is like. I’ve been struggling a bit lately with my emotional baggage. It got me thinking, because diabetes is a invisible and manageable disease how does that affect understanding from others outside our community?
In their eyes are we not sick enough? If you were to be diagnosed with any disease - would it be this one? Do they think we are lucky because we live with diabetes?
It’s a mixed bag, like most of life.
One the one hand, you have a serious disease which is a continual drag on your time and energy, but elicits no sympathy since it can be hidden well. On the other hand, we can “pass” for normal, healthy people until somebody asks us about our weird cell phone with tubing.
I think lifelong diseases which require a lot of concentration and energy to manage are more difficult psychologically since some aspects are under your own control, and thus can elicit self-blame. If you are diagnosed with stomach cancer, the disease is completely external to your own sense of self - nobody would say “I’m a stomach canceric.” The treatments mostly involve relinquishing control to a hospital or caregiver, whereas diabetes requires becoming a control freak and managing everything yourself.
I can’t really speak for any other diseases and which I would choose - I would probably choose diabetes because that’s what I know. The worst thing about any condition is not knowing what coping mechanisms exist - perhaps getting around in a wheelchair is do-able, but to me it seems horrendous since I’ve never had to try it.
i think that there will always be a worse situation then our or you and me. But the pain we feel or the things we go through are still important, because it affects YOU. And when it affects you it affects everything in your life. So though it’s nice to consider others and be thoughtful, your care is YOUR responsibility including all the emotional stuff. How others view you can only be based on what they already know and perceive, but your not everybody or your not like all the other diabetics. Because your you and it’s your disease and your management it willl depend on how you can handle it best. I don’t think anybody feels lucky to be diabetic or any other sickness, i do think we strive to be better versions of ourselves it’s just in our case we have to be the best we can be in diabetes. I don’t think your being selfish for feeling overwhelmed, because it’s a big thing in YOUR life. We can’t control others and what the do, we can only control and take care of ourselves.
I think that it’s wrong of others to make assumptions about anyone else’s situation, be it cancer, diabetes, or something that isn’t even a disease. For all anyone knows, maybe you do know what “real pain” is like. People need to think before they say things sometimes. Me too. I’m trying my best to keep my foot out of my mouth, though haha
As far as having a disease goes, I’m comfortable with my diabetes, and I now know that I can handle it pretty well for the most part. It’s what I know, like what Dave S said, so I wouldn’t trade it for anything else now.
I’ve suggested this before… I think we need to have a Type 1 Diabetes march on Washington, and all of us drop our drawers and take a shot in the butt!!! (No ONE ever sees me do this… but it is a five-times-a-day-and-sometimes-more part of every day in my life.) Yes, it is largely invisible, and even with the close friends that I share my challenges with, they don’t completely understand it… that is why I love it here…
There has been recent legislation that gives us certain rights under the Americans with Disabilities Act. Even though I have lots of not-very-productive days, I have not ever really considered myself disabled.
Part of the reason the disease is rather invisible is because so many diabetics are very strong people–most of us just handle it and don’t ask for special treatment.
I heard some where a number of years ago, “you must feel pain in order to know what it is to feel good”. I think it was some philosopher. It struck me that maybe those of us with a chronic disease should be happier because we feel pain daily. Between finger pokes, shots, infusion sets, eyes going funny because we are low(oh maybe I need to eat something), blood draws, we feel our share of pain daily. If pain or the knowledge of pain enables me to be happy where is my happy? My girls often say “Daddy you don’t laugh” or "“Daddy you don’t smile”. They are wrong but it seems to take more to make me smile or laugh. Is there too much pain? Is there a threshold that just takes longer to cross? We don’t have trendous amounts of pain in a single burst, at least not right away. But after a few compications it is a different story. Ask someone with kidney disease, or neoropathy, or some of the other complication if they are sick enough.
I think for diabetes there is an introductory period where you get to know the disease before it bites you. But when it bites we are sicker because by then our immune system can’t fight as well and we may be fighting several things at once. For the first bit (and I hope we all get this time) there is a time where we maybe aren’t sick enough. GOOD! But there is a time coming where we will be sicker than most and feel more pain and hopefully we can still be happy.
I shouldn’t write when I am having a bad day. As I reread this it is a real downer but I still think it addresses the point.
I like to think of diabetes as a “condition”, not a “disease”. So it sort of changes how it can be compared…
About the invisible part, yes, invisible conditions (diabetes is one of many) brings different interaction with the outside world. On the one hand, it’s nice that I can control who knows about my diabetes and who does not (although I’m very open about my diabetes, the option is there). But, when I have had days with BG above 500 mg/dl (28 mmol/L) and ketones, people told me that I “looked” fine. They could not see what I felt… and yes that creates some emotional challenges.
Honestly? I don’t think anyone who hasn’t lived with the disease can really appreciate (carefully chosen) how dibilitating diabetes can be. Yes, there diseases that people die from in less time, yes there is pain involved in all diseases and health conditions, but even family members can’t know truly what it is like living with diabetes. And it is so individual, you and I can be treated with the same meds, eat the same foods, and do the same exercise, yet we are going to react differently because our bodies do react differently. I suppose they do think we are lucky, it beats having cancer, CP or other diseases??? I guess maybe, but in my mind and soul, no it is just as frightening, just as worrisome, just as life consuming. We just are able to treat ours for a longer time perhaps…but is it better, not in my mind.
My sister suffers from debilitating basilar migraines… I think her condition is MUCH worse than mine, and not because of the pain… but because hers will actually prevent her from functioning on any useful level for a few days at a time… I wouldn’t want to deal with that (really, it sucks). I can deal with D…
Awww…Red! What an insensitive comment! Invisible illness is such a double edged sword, since we can fake “normal” so we don’t cause constant attention (like someone who is paraplegic) but on the other hand, our “pain” is not so obvious.
For me, it wasn’t until I got Type1 at age 34 that I realized how my life-long blood disorder paled in comparison. With that I was battling infections, hospitalizations, blood transfusions, and removal of some organs, plus a secondary blood disorder. Sure it wasn’t easy. I thought it was a challenge. But in between episodes, I could REALLY fake normal. So many people never knew about my blood disorder. But diabetes? There is no faking. There is no fighting it. There is just micromanagment of every aspect of life, and daily multiple injections of life support.
Then, when I was diagnosed with lymphoma in 2007, I was not nearly as upset as the T1 diabetes Dx in 2008 (once I realized how awful managing T1 is). I knew I would fight the cancer. I knew I would either beat it or die. Either way, it’d be short-term. Turns out I was “misdiagnosed”. If I could switch? I’d prefer the cancer diagnosis. Everyone I know that DOESN’T have diabetes thought I was crazy when I would say that the first week of living with T1. But I feel like those who live with T1 understand, even if they don’t agree. I’ve met people online, unfortunately, who have/had both!
I say that to say, it’s definitely not a contest. I can think of a dozen disorders I would rather not trade T1 for. But cancer seems to be the one the public is most scared of. Even though I’ve lost loved ones to it, I also know people who have fought it. And they are done. And back to living “normally.” I think that may be the appeal to me. Possible survivors. How do you measure surviving diabetes?
I think many people do think we are lucky because there it can be “managed”. But I explain to people that I am on life support (insulin). Every day til I die. That changes how they look at it. A little. 
Thank you everyone for your thoughtful comments. It’s great to have these kinds of discussions with people who I know understand. Manny asked in another post how Tudiabetes has helped you and it’s exactly this type of discussion that helps me.
I think I just wanted my friend to acknowledge my own disease and story. To understand that I have my own difficulties and emotional challenges even if they don’t appear to be as awful as someone suffering from cancer. I wanted her to understand that I still think about my survival and possible death in ways that she has never had to experience. Yes, I am grateful that I don’t have a worse condition but it still ‘sucks’ to have this condition. For so long I have felt as if I had no voice. I just want my story, our story to be heard and taken seriously.
Thank you for the earlier book reference, please keep those coming. I’m all about reading as much as I can right now. It’s helping me move through my emotions with a bit more clarity. Going on the OmniPod after years of multiple injections and a miserable experience on the MiniMed in 1997 has felt almost like being diagnosed all over again. It’s brought up a lot of my baggage.
I’m reading a very old book ‘Coping with Juvenile Diabetes’ and there is a chapter on ‘The Trivialization of Distress’ or disease and they talk about how this, in all it’s good intentions, can have a very negative impact for the person suffering with the disease. Personally, this is how my parents handled my diagnoses and I guess my friend just pushed some very old, raw nerves. My parents used to tell that diabetes was just like putting on a pair of glasses. Well, we all know unless those glasses can eventually kill you and stab in the eye with a sharp needle each time you put them on - there is nothing similar between putting on glasses and living with this disease.
Just trying to figure all this out and get a handle on my feelings - talking helps!
Thank you again
Judith, thank you. I find some of the reading very helpful.
I don’t think of DN as “lucky,” quite the reverse… However, we had to go to Shriners in Philadelphia for Vertebral Stapling because she also has scoliosis. Her back looks absolutely straight now, and no fusion! While there, we saw very disabled children in the waiting room, with artificial limbs, some in wheelchairs. Shriners has the Rehab for paralysis and spinal injuries on the same floor she was recouperating from her surgery. One boy paralyzed from the neck down in his wheelchair, two adorable children having “wheelchair races.” One toddler, with half an arm, two twisted feet, many operations to come… Shriners treats these children free of charge, does not charge insurance, as many of the operations they do are “experimental” and insurance won’t cover it. Now, yeah, feeling a little bit luckier. Which is not to say feeling 100 percent lucky. It’s all a matter of degree. P.S. I get annoyed with the “real pain” and cancer analogy. First of all, the “real pain” associated with cancer is temporary. If you are lucky, you will be in remission. Very lucky, permanent remission. If we knew the outcome would be positive, I would choose cancer over Type 1 any day. But we don’t know the outcome. The other outcome is death. Maybe your friend could volunteer on a dialysis ward or help patients with complications of diabetes so that she understands your fears. Although I believe most will not suffer these complications, they do exist and do cause stress. Tell her unless she walks a mile in your shoes, SHE is the one who should volunteer. She is the one making the insensitive comments. I think she was just trying to get you into that “glass half full” frame of mind, LOL.
If ‘we’re not sick enough’ that means we are exercising iron discipline, treating food as medicine, hovering on blood sugar readings, and agonizing over A1c.
I don’t envy cancer patients, nor heart patients, nor any other type patients. But I’m 50 years type 1 and that means I have fought this disease like a rabid weasel for a very long time, fought it knowledgeably and with dedication. I am, all things considered, very healthy, good eyes, kidneys, blood pressure, A1c. Unless I get careless and step in front of a bus, it is going to kill me. But I do not intend to let it kill me one minute before it absolutely has to.
It just ain’t necessary to ‘guilt trip’. Life is hard enough with type 1. Basically everything you do affects your diabetic condition. That is 24/7, no break, no letup, you live by knowledge, which guides discipline, or you lose body parts and functions and ultimately die, sooner or later, for lack of knowledge and discipline. It’s just that simple.
Perhaps cancer is your friend’s adopted disease. Possibly she has a close connection with it through a loved one and she sees the world from that perspective. If that’s the only chronic disease she knows, that’s the color of her world.
It wasn’t very friendly of her, IMHO, to dismiss and belittle your predicament when you were seeking support. You might simply tell her that.
I like the idea of turning the tables and suggesting that she volunteer to help someone who has complications from diabetes or at a camp for diabetic children or watch a diabetes educator explain to new parents and their newly diagnosed child how their lives are going to change.
Good luck,
Terry
i think we are lucky enough to have a disease that is manageable. In the case of cancer, there is no guarantee for the treatment to work. It can also depend on the type as well. Of course, there is no guarantee for us either. All we can do is try to keep the best control we can and hope that is enough, but if that’s just not what’s in the cards for us then… well that’s a common human characteristic.
I think i would prefer to have diabetes over most other things. Imagine something worse, like alzheimers, autism, ms, or progeria. Not playing one is worse than the other game, just saying if i had to pick, i’d pick what i have. There are worse cross’ to bare.
As far as your friend goes, tell her to volunteer her time in a Juvenal diabetes ward in a children’s hospital. She may not see you as suffering, you are a big girl (joke) but to watch a 5 year old do what you do and say that’s not real pain?
she might see the struggle a little differently
when people ask me how long i have had diabetes i usually reply with this “since i was for” give thoughtful stare “so that means about 19-20 years”
when i was younger there wasn’t any jonas brothers to show that a person with diabetes can do just about anything. all we had back then really was mary tyler moore. but to say that we don’t have it bad enough is kind of like saying look at me i can’t put one foot in front of the other, im not trying to dumb down anyone, but i feel like i’d rather people look past what i have and look at what i can do.
Having a chronic disease wears on you. What makes diabetes hard is the fact that we are in charge 100% for treatment, where other disease’s are in the hands of Doctors. This puts a trmendous amount of stress on us. I can sometimes eat too much ,not take enough insulin, not exercise, noit mage my stress etc etc… It is easy to blame yourself for these things. I have had it for 43 years . I thing some of the blame rets on organisations who have said you can live a normal life with D. What is normal
OK, so the “pair of glasses” comment was so well-meaning but so totally wrong. Thank goodness my parents didn’t try that one on me (or maybe I’ve blocked it out)!
I’m picturing a really unusual pair of glasses, studded with lancets, smeared with blood, Lifesavers dangling from strings, and little aromatherapy puffs of ketones.