Holy @#$! Amazing Stories, Vol. 8: Holy Insensitivity!

I usually like to tell the cheerful stories.  But the fact is, sometimes bad things happen to people because they have diabetes (or other chronic diseases; see yesterday’s Forbes article Your Job or Your Life).  So while I’m on a roll here addressing the downer side of life, allow me to share one reader’s not-so-happy story (originally submitted as a counterpoint to the Diabetic Partner Follies):

Hi Amy,

I don’t have a partner now, but I did at the time I was diagnosed with Type 1 diabetes at age 28.  I don’t know if you would want to put this on your site or not, it is not a supportive story, but I just thought I’d offer a “flip side” of this situation.

Lonely_1 When I was 28 years of age I was involved with a man who earned his living working for a small business that made prosthetic limbs.  We had been together a couple of years, and had lived together for around 9 months.  We were having problems, so I had moved back out.  I was on the verge of completely ending it if things didn’t change.  This man simply had no tact or empathy when it came to others, I had started to feel that the only reason we were together as far as he was concerned was that if we broke up it meant that he had “failed” at something.  He started seeing a behavioral psychologist, so I was sticking around to see if things would get better. 

I scheduled my annual physical
exam for May of 1998.  Before my appointment I hadn’t really noticed
anything unusual, but I’m not very observant.  My coworkers, on the other
hand, had pointed out that I was going to the bathroom about every 45
minutes, seemed tired and irritable all the time, and seemed to have lost a
lot of weight.  Then I realized that I was also drinking a lot more fluids
than normal, and eating 3 times as much as usual.  I was always hungry. 
But when I weighed myself I had dropped from 115 pounds down to 88
pounds.  This was a couple days before my annual physical exam.  One of
my coworkers who has Type 2 diabetes brought up diabetes to me and told
me I should get tested for that.  When I went in for my physical I
mentioned my signs and symptoms and asked them to test me for diabetes. 

The doctor said it was unlikely as I was too old for Juvenile Diabetes and way too thin for Type 2 Diabetes.  They didn’t even want to bother testing me, but I insisted.  A week later I went back to get my test results and they were convinced I must have Type 2 because of my age.  They started me on pills which, needless to say, didn’t do anything.  It took them a few more weeks to get all the tests back that showed my “average” levels of around 1000, and my A1c of 19! They were surprised I was even walking around at that point; they said I should have been in a coma.

At any rate, of course when I was first diagnosed with diabetes the first thing I did was call my boyfriend for support.  I was in shock and scared beyond belief, crying and upset.  I told him I had diabetes, but they weren’t sure which type yet.  His response to me was “Well, at least you’ll keep me in busy when you lose your limbs, more than half of our business is from diabetics.” 

I had never been so hurt in all my life!  Here I went to him for support, caring and loving and he said something so tactless and so cruel to me.  I hung up the phone and I never spoke to him again, that was over 8 years ago.  I think that was the most hurtful thing ever said to me in all of my life.

Since that point in time I have tried to have a relationship with others, but it seems I have not been so lucky as I’ve had more than one relationship end because after the person learned what my future could be like since I have Type 1 diabetes, they decided that was too much of a burden for them.  I know that others have been successful in finding a decent, caring and loving significant other after having developed diabetes, but truth be told at age 36 with no possibility of having children and a possibly very dismal future ahead, I don’t hold out much hope that I will find someone who wants to stick around.  I’m not bitter, as it happens I love my solitude anyway, but it would be nice to find someone.

Sincerely,
Melissa W.

In all honesty, I didn’t know quite how to respond to Melissa.  Maybe some of you can offer words of encouragement here.  Isn’t that what the OC is all about?

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25 Responses

  1. Bernard Farrell
    Bernard Farrell October 20, 2006 at 7:51 am | | Reply

    Amy

    Maybe you can pass this on to Melissa. I know I’m a man and that means our stories aren’t exactly the same, but still.

    I met a wonderful woman in 1991, when I’d already have Type 1 diabetes for nearly 20 years, and was in my mid 30s. At one stage we attended a Joslin clinic DOIT program on diabetes. I think it must have been hard on her: watching slides showing foot and leg damage; listening to tales of side-effects of various sorts; getting some understanding of the level of monitoring, etc., required to stay on top of my diabetes.

    Once we met with the doctor running the program and my girlfriend asked him THE question. She thought I was pretty cute but was it worth her while investing in me because I might not be around for long enough. I think the doctor was surprised with her frankness.

    Anyway, we’ve now been married for over 12 years. And she’s seen me carried away in an ambulance and given me glucagon shots. So life is not perfect. But an insulin pump has helped a great deal and we deal with difficulties as they come along.

    Look at it this way. Melissa knows she has a chronic disease and hopefully works like most of it to live with it. A man may marry someone who goes on to develop a chronic disease, that’s just life. Her future husband already knows about this aspect of her, I think that will be just fine for the right man.

  2. Kathleen Weaver
    Kathleen Weaver October 20, 2006 at 8:28 am | | Reply

    You can have a happy, fulfilled life without a partner. You can even have one knowing that you only have a few months to live.

    My father was given that diagnosis at 46 and he spent the last three years of his life, housebound but was still very active in the community. He ran many events for fundraising and helped support several missionarys.

    Yes, he had a wife and he had children, but the accomplishments he made during those last few years meant more to those who knew him than the other things.

  3. J
    J October 20, 2006 at 10:12 am | | Reply

    Don’t give up Melissa! You can find someone that this is no big deal to! *Do not view yourself as “damaged goods”. I am single again for various reasons, but I have known, dated, been in LTR’s with many men that had varying degrees of coping skills when it comes to the big D. Some dislike it at the outset and will tell you. NEXT! Others realize the enormity after a few months and say bye bye. It’s funny I used to keep it hidden on the “older” insulin, and revela it only when I knew I “had them” in my spell. Not possible on the basal / bolus regimen. So I am out of the D closet! One date recently told me he was “horrried” at the amount of testing I did! Whatever. I am taking care of myself – that’s what counts. I am also more compassionate as a humna being as a result of being diabetic since age 10. I feel that being diabetic gives us a uniqueness (to say the least. Someone that truly loves you will love you in “sickness and in health”. Diabetes is part of who I am. Besides, a man is like a bus – just wait and there will be another one along in five minutes!

  4. Lyrehca
    Lyrehca October 20, 2006 at 11:08 am | | Reply

    Hey Amy,

    I just read Melissa’s post on your site. I’d be happy to correspond with her. Being type 1 for 29 years now, I’ve really only had one particularly insensitive boyfriend who said, after we broke up, that I had “too many health issues”. I was floored (and frankly, not all that sympathetic when I heard his father had a massive heart attack and died a year or two later. All I could think was “You’ve got crap genes in you too, baby. You’ll be dealing with your own health issues, too.”).

    But years later, I can happily say that I’m now married to a terrific guy, who is incredibly supportive with both the diabetes and a host of other medical (and who knew? Not at all related to the diabetes) issues, as well as having dated plenty of quality males in my time. It sounds like Melissa was perhaps particularly affected by the insensitive boyfriend at the time of her diagnosis, but that doesn’t have to define her entire love life. I’d be happy to email with her if she wants insight on how to deal with dating and diabetes, marriage and diabetes (there are quality men out there!) and (I’m not sure why she says she’ll never have kids but) pregnancy and diabetes if she’s
    up for it.

    Best,

    Lyrehca
    Lyrehca@gmail.com

  5. Joan R.
    Joan R. October 20, 2006 at 11:55 am | | Reply

    Hi Amy:
    I read Melissa’s letter today and it made me really sad. I want to reach out to her but was not sure how to respond to her via your website. Please pass this on to her.

    Dear Melissa:
    I read your email on diabetesmine.com today. I feel very sad for all you have gone through. I believe we can be the “victim” of our experiences or we can have our experiences, then learn and grow from them. I have had Type 1 for 30 years and though my life was not always that way, I am now very healthy, productive and happy. I am active in my community in which I reside as well as the diabetic community. I would like to encourage you to find something to get involved in where you are connected with others. Please try to move beyond your negative experiences. I would love to be in contact with you.

    Thanks for reading this.
    Joan
    catmom1@worldnet.att.net

  6. Annie
    Annie October 20, 2006 at 6:20 pm | | Reply

    Dear Melissa,

    I am in agreement with Joan. Please don’t let the response of a dolt like your ex-boyfriend ruin your future experiences. I am 44 and was diagnosed 7/06. I am lucky enough to have a supportive husband and friends, as well as 2 beautiful children. At first I was embarrassed to have to test or give my insulin in front of others. Then I just decided that this is who I am going to be from now on and if someone doesn’t like it, too bad for them. I guess what I am saying is, many responses from people are dependent upon what your attitude is. I am not out there in the dating world but have a hard time hearing that men are running away from a great person just because of diabetes. How shallow are they? The fact is, there is absolutely no reason that, as a diabetic, you can not have children. My husband is an obstetrician and he manages pregnant, type 1 diabetic women through healthy pregnancies all the time. Please don’t give up. I am sure you are a wonderful person and some day there will be another wonderful person who will love you more than he is afraid of diabetes.

  7. DensityDuck
    DensityDuck October 21, 2006 at 11:27 am | | Reply

    Sheesh. Overreact much? I wouldn’t have interpreted his statement as anything other than a joke.

  8. Bonny C Damocles
    Bonny C Damocles October 21, 2006 at 12:15 pm | | Reply

    Attracting a lover is no harder than showing him what kind of stuff you are made of. Diabetes does not count if you possess extraordinary qualities. It surely becomes a big issue if the disease diminishes your self worth.

    Simply said, how you take care of yourself and your diabetes reveals the kind of person you are. To the future mate, the basic question he will ask himself is: Will my life be better and happier with her?

  9. Sue
    Sue October 21, 2006 at 4:00 pm | | Reply

    I’ve been on insulin for nearly 50 years the last time I checked I had all my limbs no eye damage or kidney damage, infact no complications what so ever.
    If a bloke doesnt want to know you because you have diabetes he ain’t worth knowing.
    Dwelling on what could happen is a waste of time and energy, after all before or even if you get complications you could be run over by a bus. But on the other hand you might not be run over by a bus

  10. kim
    kim October 22, 2006 at 11:52 am | | Reply

    There are definitely more supportive people out there, who are not afraid of facing the consequences of Type 1 diabetes. Before we were married, I had a 3 hypoglycemic seizures, and while “coming to” in a hospital once, I told him he probably would want to re-think our future plans. He told me he’d marry me right then and there.

  11. Flightfire
    Flightfire October 22, 2006 at 2:00 pm | | Reply

    I would have to agree with the person who said you overreacted. I understand that there was probably more context around the conversation than you put in your story, but that’s approximately how I would’ve reacted if my girlfriend came to me with a situation like that. I would try to make a joke to show her that it wasn’t really all that bad, and that I would always be there to make her smile. I’m going to be the rock that anchors her while she cries.

    The joke was in bad taste and maybe he actually meant it, but it sounds more to me like he was trying (unsuccessfully) to make you smile.

  12. Jen
    Jen October 22, 2006 at 2:26 pm | | Reply

    Dear Melissa
    I have just read your story and found so many similarities to my own life. It seems we were both involved in numbskull men when our symptoms appeared, and I reacted in exactly the same way when I found out I had Type I diabetes. I cannot say my life is brilliant at the moment, but I can say that having time on my own to learn how to cope and understand this condition has seemed to help. I have had so many people making varying comments such as, “oh it’s only diabetes” to “how can you cope?”. Well, the thing is, sometimes I don’t cope and its during these times that I find my friends or family and let rip with my feelings. Or, like tonight, I’ve occupied myself by going on the internet in search of other people who may feel the same way as I do. I’m terrified that at 36 no man will like to look at my various injection sites / lumps and various other lumps that appeared due to weight gain from the insulin. I’m also terrified that even if I do meet a bloke who is kind, he may not want to go through a pregnancy with me due to all the risks that I stupidly read about in the UK diabetes magazine Balance. Instead I’ve found myself filling my time with shopping (and my purse is suffering!), reading and sticking my head in the sand denying that I feel like total crap. How I do manage though is to give myself little things to look forward to. Take care. I’ll be thinking of you x x

  13. Dennis
    Dennis October 22, 2006 at 8:08 pm | | Reply

    Finally , it’s so nice to hear about a Woman who is upfront about her T1 to potential sutors…
    Sure wish I was 20 yrs younger (I’m 59 ) < I’d be very happy being with you…

    Here are some postives you might keep in mind…
    1) your in the 2nd phase of many others in their life, meaning? You have an opportunity to meet alot of Divorced Men with Children( and have the joy of not going thru it all the morning sickness, LOL )…Remember over 50% of them are or have been divorced..and have had their Children and now are looking for the best one, the 2nd time around..so the pressure is off you to produce..

    2. Why not another T1 ? You will meet alot of them at Fundraisers, Diabetes Walks , etc. Even by simply posting a Flyer at your local Grocery store to volunteer to help other T1′s. ( I just got thru with our DB walk as a Volunteer cking the walkers in and met alot of Single Guys and gals…looking for that someone…( your age group…ie: 30′-40′s..)

    And who knows, you just might save his Life by helping him with a few tricks you’ve learned! Or one of his T1 Kids?

    Now wouldn’;t that be something…

    and if your ever in Lake Geneva , Wi. area, look me up

    Keep the faith

  14. Melissa
    Melissa October 22, 2006 at 11:08 pm | | Reply

    I’ve been away on vacation, sorry for the slow response. And thank you all so much for the support! To the two comments above that stated I “over-reacted”, I had JUST been diagnosed and knew nothing about the disease I had, and I had been with that man long enough to know that he was not just making a joke – in fact, his ability to be completely “cold” and “tactless” when it came to other people’s emotions/situations is the main reason he was in therapy.

    I am quite happy where I am in life right now. Sure, things could be better, but I’m happy. I would like to find someone to be with, but it’s not a big deal if I don’t either, as I said, I’ve come to enjoy my privacy and solitude. As for kids, it’s absolutely not a possibility as I had my tubes tied. I was already 75% certain I didn’t ever want to have kids before I got the diabetes, after the diabetes, well that just cinched the deal for me.

    Dennis in Wisconsin ~ hey, I’m only a state over, in Minnesota, and I’m actually thinking of moving to Wisconsin in the future. :)
    Melissa

  15. Myra Shoub Nelson
    Myra Shoub Nelson October 23, 2006 at 6:05 am | | Reply

    Dear Melissa:
    I have 2 chldren, ages 22 and 19 – and had them after I was diagnosed with Type 1. It takes energy and committment, and a team of GOOD PHYSICians. IF I believed my first Dr. I would have no kids today. Wouldn’t have missed it for the world

  16. Jen
    Jen October 23, 2006 at 1:04 pm | | Reply

    I just read my comments written last night and quite obviously i was having a bad day! I’m not a real moaner and 99.9% of the time have a very positive outlook on life. I work hard in a secondary school and vent all my motherly instincts on the poor blighters I work with. I suppose the point I’m trying to get across is that I’ve only had Type 1 Diabetes for 2 years and it is all still relativley new to me so I’m bound to have good days and bad days. Today is a good day, bloods have been level even though I’ve got a cold (probably why I was a bit down yesterday) and I know that there are some gorgeous, kind men out there, but they seem to all be in the USA! Take it easy Melissa, and keep your chin up x

  17. Keith Rust
    Keith Rust October 24, 2006 at 10:25 am | | Reply

    Melissa -

    I am a 35 y/o single T1 male (since age 12) and I have to say that is one of the most horrible things I have heard anyone say! There have been many times in my dating life that I know this has been an issue – whether confirmed or not. I have had girls fall in love and think it is their job to “take care of” me…and on the flip side, had many wonderful 2nd and 3rd dates that went no furthur because I was up front about my diabetes. I was also told throughout my 20′s many times, “Oh, (so and so’s cousin) had that and they died at age 30.” For the longest time, I thought I should not get married because I don’t want to leave a young family behind. Well, I will be 36 soon and people constantly ask if I am 28 or younger, and I attribute it to being conscious of my health and well being. I am not perfect, but I have always stayed in shape and tried my best to do what is best for me. I am confident that in 10 years, I won’t look or feel much older (besides maybe some aches) and that considering all of the other health and mental baggage people today can have, I am pretty maintenance free. I wish I could give you a giant hug right now but consider this the e-version. :) Your ex is truly in for some surprises in his life. I am in the USA, so maybe I am one of the ones Jen is referring to above ;)
    Take care!!!
    Keith

  18. Keith Rust
    Keith Rust October 24, 2006 at 10:39 am | | Reply

    I just read the “overreacted” responses and they do not belong in this forum. Even if you were a couple with excellent rapport and a great sense of humor, that is truly tasteless in any context. Would you tell a person with their face mangled in an accident, “great, I’m a plastic surgeon – job security???”.

    Kudos, Melissa
    PS – I had this wild idea about a month ago to start a sort of match.com or myspace for diabetics to network – I would love to find another T1!

  19. Jen
    Jen October 24, 2006 at 12:39 pm | | Reply

    Hey Melissa

    It’s good to read that there are other women who’ve had crappy boyfriend experiences. I went through something similar to yours, so I feel your pain. I am a T2 because of the drugs I had to take for Lupus. I will spare you the details but there was a boyfriend shaped hole in the door when he found out. I too realize I will probably never meet anyone or have children. Thanks for letting me know I’m not alone.

  20. AmyT
    AmyT October 24, 2006 at 12:55 pm | | Reply

    Sounds to me like Melissa knew that this guy was pretty @#$! insensitive even before the diagnosis, but his reaction obviously was the last straw. I say Good Riddance!

    Anyway, Keith, if you’re looking for another T1, you might try Prescription4Love.com (it’s not just for STDs).

  21. DensityDuck
    DensityDuck October 24, 2006 at 8:09 pm | | Reply

    Keith: Your thinking is poisonous. The belief that I Have Diabetes And So My Life Is Now Over is drama-whoredom of the first order. Diabetes is like being lactose-intolerant, or having a problem digesting red meat. Yes, it’s scary the first time or two that you have a low, and the docs tell you horror stories about mismanagement to “scare you straight”, but you know what? Buy a pump, test four times a day, and you’re about as controlled as the rest of the populace ever gets. Or do you think that those people snorking down massive wads of potato and cleansing their palates with buckets of syrupy soda are actually healthy?

    Approaching diabetes with an attitude of humor and acceptance–even if it’s black humor, and grudging acceptance–is certainly going to leave you in a better place, mentally, than this sackcloth-and-ashes, If I Accidentally Eat One M&M I Will Keel Over And Die Right Here In Front Of You business. People have made diabetes out to be this huge thing and it is not. I’ve seen several people get diagnosed with diabetes and completely lose their shit about it–wailing about how “oh I can’t eat ANY of my favorite foods now!”, crying like children at the thought of needles, refusing to stick their fingers because the number might be above 140 AND THAT MEANS THEY ARE GOING BLIND. This behavior makes me sicker than diabetes ever managed.

  22. AmyT
    AmyT October 24, 2006 at 10:42 pm | | Reply

    Oh my, Mr. Density, we’re getting testy.

    We’re supposed to be SUPPORTING Melissa here, remember?

  23. Melissa
    Melissa October 25, 2006 at 7:22 am | | Reply

    Thanks again for the support everyone. DensityDuck, I don’t think you really read my story – this isn’t something that happened to me 5 years after getting diabetes, it happened the WEEK I was diagnosed with juvenile diabetes. If you weren’t scared and just took it all in stride, good for you, but I was scared, and I daresay most people in their first week of diagnosis were scared. I’ve had diabetes over 8 years now, I can joke about it, I’m happy, I’m well-adjusted. What my ex said, and when he said it, was completely inappropriate, insensitive, and not at all supportive – when you are in situations like that and you turn to your loved ones to help you get through the traumatic event, that is NOT something that helps in any way. And as for your response to Keith, it sounds to me like he has been doing everything he’s supposed and staying healthy. I think you have a problem understanding “past tense”, as in things that happened PREVIOUSLY, not NOW. And I think a comparison of juvenile diabetes to lactose intolerance is ridiculous – lactose intolerance, great, just avoid dairy products, juvenile diabetes requires a whole lot more work, time and money than that.
    Melissa

  24. Keith Rust
    Keith Rust October 25, 2006 at 9:28 am | | Reply

    “The belief that I Have Diabetes And So My Life Is Now Over is drama-whoredom”. Interesting…lol..talk about overreacting. Complications were always in the back of my mind, not poisoning my life. I’d known only one other type 1 for 15 years and he died at age 20. I had nothing to go by, and I survived by having a supportive family, educating myself on diabetes and taking care of myself (back in the day of double void urine testing and 6 shots a day). I did NOT survive by going online and venting my frustration by criticizing other diabetics that were looking for a supportive forum. Mind you, Al Gore hadn’t yet “invented” the internet in 1983.

    I replied to support Melissa. She opened her heart and exposed a painful experience and how it made her felt and we are here to help comfort her. Growing up with Diabetes had made me more of a compassionate person and I am particularly sensitive (protective) of my fellow T1′s who are trying and finding out it isn’t easy. Stick your finger 4 times a day and buy a pump-I’m not sure what kind of alternate diabetes universe in which you exist, but it is not that simple for most of us. It took 5 years of insurance fighting to get a pump and I test no less than 10 times a day. I have put more thought/trial and error and time into how to manage my diabetes than most other things in my life. Anything I have learned or experienced, I would love to share with my fellow T1′s.

    Melissa, thank you for your story and your counterpoint to lactose intolerance. Having T1 is more frustrating than just having to pop a pill every day…

    Have a great day sweetie!

    Keith

  25. Jen
    Jen October 26, 2006 at 2:23 pm | | Reply

    Oh my word! I’ve just read DensityDuck’s response. Talk about “I’m alright, sod the rest of you”. I am lactose intolerant and TRUST ME, it’s much more easier to handle than being a T1.I don’t want to start a big slanging match here, but please remember DensityDuck, that everyone is totally different; each person deals physically with their T1 totally differently; each person deals mentally and emotionally with their T1 totally differently. I am new to this T1 stuff and really appreciate it when people are supportive, not when they make me feel a total idiot because sometimes I find it a bit of a struggle, eg, having a hypo whilst trying to teach 30 kids with behavioural problems. Trust me, that was real fun! But funnily brought out the best in the kids. To everyone here, thanks for the support. To DestinyDuck, please be just a little bit more tolerant to those who don’t handle things as superhumanly as you x

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