Someone in this thread used the phrase the “trivialization of diabetes” and that clarified something for me. I have been struggling since February getting on the right regimen of insulin and clarifying my correct diagnosis of Type 1.5. I’ve e-mailed a close friend and my sister-in-law reporting my progress then been puzzled when I get comments like “I’m so glad you’ve gotten a handle on this thing and can get on with your life.” I feel irritated and think, we’ll they’re being positive and I don’t want to be negative and say, “not exactly.” And my friend’s husband has diabetes as did my sister-in-law’s father! They mean well but they just don’t get it!
Nobody wants any disease…much more a fatal one. But I thank God everyday that He gave me a condition I can manage and handle…no matter how difficult and tiring it may be. I thank God everyday that I am complete, that I can do activities any normal or healthy person can do. That my having a happy and normal life partly depends on how I live it. Lucky? Perhaps. But Ived always believed that everything happens for a reason.
How about living with perpetual pain from nerve damage? I know that for me, I’ve been unable to ‘forget’ about Type I for much more than 2 or 3 hours when doing anything other than sleeping.
More importantly, this disease is a huge drag on family members. I can’t begin to imagine what they live with.
Red-
Your subject line caught my eye. I have been Type 1 for 37 years. I’ve never considered myself sick. I do get sick… the normal flu, bronchitis, “colds”…but I’ve never thought of myself as sick. Diabetes is a disease. It is a condition. it is what it is. I work hard to manage it. It is manageable. I have learned to be adaptable and flexibile to life and the different situations that present themselves to me on a daily basis. It is invisible, but I don’t allow it to be “unknown”. I tell everyone. At least when the opportunity presents itself. Luckily, I don’t experience pain with my “D”, but I do get discouraged. I often tell my family how much I hate it… but that’s normally in the middle of insfusion set changing. It never goes away. It’s always “there”, but I try not to let anyone think I’m “sick” and I work very hard to keep myself as healthy as I can.
Emotional baggage is something we all carry with this invisible disease. Some days are better than others. I just lost a friend to cancer and I know that he suffered. For 3 long years he was in terrible pain as the cancer quickly progressed from his prostate to his bones. By the time he died his bones were riddled with tumors. He felt pain. I simply feel annoyed. The diabetes will be with me forever. I can’t make it go away. I wish you luck with your emotional baggage, because as I said, some days will be better than others.
Hi Red,
I’m a psychologist who specializes in working with folks with chronic health conditions and rehabilitation medicine. I’m also a type 1 diabetic (MDI). I work with people on a daily basis with spinal cord injuries, head injuries, strokes, cancer, diabetes, migraines, fibromyalgia, etc. Thus I see both lines of the “visible” vs. “invisible” disorders on a daily basis. I’ve been interested in doing some research on the psychological and social impact of one vs the other as well because we face very different issues. I have to say that generally, I agree with everyone so far in that it really is comparing apples to oranges and we all face our own issues, many different and many that overlap. What I’ve learned the most in my own struggle and as I watch the resilience and rises and falls of those I work with is that it is more about how we choose to live our lives than it will ever be about how others expect us to live them. Granted, it gets hard when our struggles aren’t acknowledged or are trivialized because they often go unseen, but it is also hard for those who have more visible disabilities and are assumed, for example, to be incapable of anything because their fingers or legs do not work right. As hard as it is, it’s important to remember that this is your life, your experience and no one else’s. Ultimately, it doesn’t matter what anyone else thinks if you can find your own strength and well-being. Stay strong and I’m glad too that this forum exists for us to voice our frustrations as well as our successes. 
Heh, I went through a phase in my teens of visibly injecting myself in the arm every time I ate in restaurants to “increase awareness of Type I” although it was more an expression of teenage nihilism than anything else. 
Thank you again to everyone who has responded.
I personally do not feel it is productive to compare one illness to another. It certainly does not make me feel any better to see others suffering more than myself. The comment concerned me because basically, my friend was saying you don’t have it that bad so you have no authority or right to your own feelings. Something again my parents did often, ‘well, you could be a lot worse and have this or that…etc…’ By the way, funny comment about the glasses - I liked that.
These types of comments never made me feel better and they still don’t. I was not saying I had it worse than anyone else and I am so grateful for having the life I do have but my struggles are still valid. My feelings are still valid and I don’t want to be told otherwise just because I happen to have a manageable illness as compared to others. I’m not sitting in the corner everyday crying over this but sometimes it does hurt and it does affect how I react to things.
Please forgive me for using this forum to workout my own stuff but at least I know everyone here has had similar experiences. We all have our own story but we share a common thread.
I don’t feel sorry for myself and never had, I don’t consider myself sick, maybe a little bit more vulnerable to colds/flus and stuff sometimes but never sick. However, and this is a big however, that trivialization of my experiences and feelings that I felt from my parents and occasionally from my friends is something that really bothers me. I don’t want people to feel sorry for me but I do want them to understand that my challenges in life are very different from their own. Not better or worse but different.
I chose the language in my post to reflect my friends language. I wanted to know how other diabetics would feel and react to those words.
Perhaps I could explain to my friend that a little less judgment and tough love and a little more understanding and compassion would be welcome.
I am hoping cgms and the artificial pancreas, islet transplantation, other therapies are improved upon in the next six years, at the very least, making pump/cgms unobtrusive and comfortable to wear so people will wear them, insurance will cover them. It is so important to take some of the burden off the PWD because Type 1 truly is all-consuming. I doubt if my niece will spend the time we do to manage her blood sugars… I hope pump/cgms will be doing a lot of it for her. I don’t know how she will function at college or work if she has to get up every night for a 2 am check, etc. I don’t call checking BS every three hours round the clock “manageable”. I doubt adults have to check as much. Type 1 is a chronic illness that can effect every system in the body, so not a “condition” in my book. I consider it extremely serious. I need to think the outcome will be positive for her and, deep down, I believe it will, but only because of new advancements being made. Your parents should understand. Your close friends should understand. Anyone who sees the micromanagement necessary to survive should understand. But I don’t think acquaintances ever will, and it is better they don’t know. Less discrimination that way. I thought the post about “adopted illnesses” was on the mark. Type 1 is currently not in vogue. Once diabetes hits the general population in full force (it is predicted to explode), I think others will then “get it.”
Hi Red -
Vent away! If there I’d one place you can do that it’s here - and it sounds like your friend needs to know they hit a raw nerve.
If there is one thing I have learned through various relationships it is that noone likes to be told how to feel - and diabetes has been teaching me how silly it is to try and tell ourselves how to feel!
Thanks Dan!
It does help to talk this out. Never really got into the support thing when I was younger and this forum has finally changed all that. I didn’t know any other diabetics my first few decades with the disease and now I have a whole community at my fingertips - pretty cool.
What an interesting topic, cheers. I always felt that I was making a big deal out of the D, so I learned to be quiet. It is only since I have come here that I’ve realised other fellow D’s have had the same issues, not being acknowledged as having a lot on our plates, for one.
It is interesting how quiet we can be about having diabetes, even amongst our friends, neighbors, coworkers - I am a relative newby (a year and a half, diagnosed at 37), and when I came home from the hospital I found 3 neighbors who were all type 1, within a block and a half - none of whom I had known were diabetics at all!
One was LADA, recently diagnosed, another in his 40’s, type 1 since he was a kid - both just doing their thing without a whole lot of fuss (well a low induced car accident here, no buns on a hamburger there, but nothing I had noticed! I guess I was lucky to have people to talk to off the bat…
There’s always unfortunate sandwiches…say diabetes topped with migraines and fresh asthma, on crispy arthritis, with a little Raynaud on the side, and a glass of allergies to wash it all down.
That’s interesting that you brought up a discussion about the difference between getting cancer and having diabetes.
A colleague and I went on mat leave at the same time in 2008. While away, I was diagnosed with T1 and she was diagnosed with breast cancer. Her department threw a fundraiser for her that got $28,000 in donations. I did the Walk for a Cure in June and raised $325. Oh, and I got a bad performance review while I was away. (It’s my company’s policy to review employees who are on leave to keep them up with the system.)
It is an interesting place that we live in, as we all have a very serious disease, but we still live normal lives. People who live with visible illnesses are obviously different, but we are not. Having it has given me a whole new perspective on how others live with their own personal burdens, especially those of illness. When I was in high school, one of my good friends was diagnosed with a form of lupus. I would often get frustrated with her when she wouldn’t want to do something or eat something or just not participate in one form or another, usually b/c of symptoms or drug reactions. I intellectually understood, but emotionally, I didn’t. When I was diagnosed w/ T1 a few years ago, I immediately began to understand her in a more emotional way. I was very grateful for her having gone through this invisible illness thing before I had. While we don’t have the same illness, we can have converstations about the bad days or the worries that we have about complications. I’ve had days that I’ve wished I had something else, but she has reminded me that each illness comes with its own set of baggage.
Hey Dan…as someone said to me before…it’s amazing how many people you know who are already in, once you join the club!!
I’m both happy to hear that your friend was able to get that many donations, and saddened that yours was so paltry in comparison. Not only is it lack of management/organizational skills in the part of the powers that be at the JDRF/Diabetes Association…it’s very much an issue of how it plays on people’s emotions.
As well, I’m saddened by your friend’s dx…how is she?
How are things your way, Kelly…better? AND…how’s your wee angel?
It is true, most people have no clue about the amount of work that diabetes requires and the emotional toll, which can be heavy. We certainly do not need to go to a cancer ward to know pain. One day I commented to a good friend that the previous day I had had a “diabetes day from hell” and she was quite surprised as she never had observed me having difficulties (she was kindly sympathetic). Sometimes with inconsiderate people I will say shock-value things like “I am just on life support, if you take me off of insulin I will die a hideous death within 24 hours” and that has always quieted the insensitive person. On the other hand, I have found that by sharing my “diabetes adventures” as I call them, that others who are going through difficulty feel that they can talk to me because I understand when others will not. This has been true with friends newly diagnosed with HIV and also breast cancer.
I think… I take great offense to people saying “At least you don’t have Cancer,” or things like what were told to you… because my dad… I know, it might get old to some people, but my dad died a horrible death from Diabetes… slow, and agonizing, with all the terrible complications… with amputations, and dialysis… with blindness… with a lot of issues not being able to breath. Man, I remember one day I called him up… and he was wheezing really horribly, yelling out “Help me! I can’t breathe, I am dying!” Like… seriously, his voice was impaired, and he sounded like he was on helium, and we thought he was going to die right there and then.
My family has suffered enormously from this experience with my dad… the pain, and expense… because we dialysed him ourselves, with machines at home (overnight, while he slept)… just… giving him 24/7 care, putting our lives on hold… to deal with him… and his depression, because he couldn’t take care of himself anymore, at all… We had to feed him, take him to the bathroom, use a wheelchair to move him around because he couldn’t really use his arms very well… He couldn’t see anymore, either. It was painful, and greatly frightening to him, and to us… And it was slow, and deliberate… and gee, isn’t that what Cancer is very much like???
I swear, fellow Diabetic or not, every time I hear someone say “At least we don’t have Cancer,” I want to punch them in the face…
Once, at a sorority meeting we had an activity. Everyone wrote a problem on a piece of paper and we passed the basket. Then, she said “Lets all pull out someone else’s problem”. No? Her point was that there is always someone out there with a worse problem and always someone with a lighter load. The measure is personal.
And when an idiot measures for you and does not value your struggle - ignore them. Yesterday I was at the grocery store. With my neuropathy I move slowly. My leg brace was covered with my pants and since I have a grocery cart to hang on to I leave my cane in the car. Some housewife needing anger management classes rounded on me and cranked at me. I wasn’t moving fast enough apparently. I smiled. I mean, I’m not gong to get a tattoo on my forehead that says Handicapped. Her problem, not mine.
So – worry about you. Know that your struggle is real and cannot be measured by ignorance. Take care of you. Reach people one at a time and understanding will spread.
My husband is a cancer survivor. He was in the hospital ICU for a month, lost a lung, submitted to chemo and radiation and has a pet scan every 3 months watching for cancer to return. He also lost his voice and when he was diagnosed was fired from his job. I have T2 diabetes, gastroparesis, acid reflux, neuropathy, retinopathy and God help me teach 7th grade. Which of our slips of paper would you pull out of the basket?