56 Years of Diabetes and Still Learning

In one of the comments my blog post received last week, the reader asked if any of the writers on this blog had diabetes.


I became very reactive to this comment initially (feeling hurt, misunderstood, etc.). After all, don’t they realize that my dad had Type 1 diabetes since before I was born? Don’t they know that my professional career has been related to the psychology of diabetes? Don’t they realize that I have really spent these 56 years living around, studying, teaching, and counseling people who have diabetes?

And then it hit me. I really don’t know what it is like to have diabetes—I don’t have it. I can guess, empathize, and try to understand, but really I can’t know what it is like to live with this condition. I suppose I’ll never know for sure how readers or patients are feeling about what I say unless I too experience exactly what they are experiencing.

I believe that the intent of the comment was to point out the insensitivity of my blog entry, believing that the entry was being used to scare people into being motivated. This was not what I intended, but the point is important. Health-care professionals who don’t take the time to listen and get to know their patients run the risk of trying to influence them without understanding them. This may be done through intimidation or an attempt to create a fear of diabetes complications. This old style of influence is usually not effective, but is still used too often.

Writing a blog has been interesting in that my usual style of working with people is to have a dialogue with them. With a blog, though, I am throwing something out there, and you (the reader) might throw something back. This usually doesn’t make for great conversation, but does provide a bit of food for thought.

So here is some food for thought. I wonder what you think the pros and cons would be of a diabetes educator, psychologist, or physician having diabetes. How is this a strength? And can it be a weakness? Obviously, there are fewer educators who have diabetes than those who don’t, but maybe those of us who don’t should be listening more closely to what they have to say.

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  • Jan Chait

    I don’t think it makes a difference if a CDE or doctor has diabetes. Of the three best CDEs I’ve gone to, only one has diabetes. Of the other two, one has a son with diabetes and the other has a number of family members with diabetes. Neither of my endocrinologists have had diabetes, and none of my primary care doctors have. I think that what the ones have who “get it” is a willingness to listen to those of us who do, to learn from us and to pass the knowledge they’ve gained on to others. Kind of like, “another person had that same situation and this is what she did.” Even people with diabetes can be rigid in their thoughts about what is right, as if their philosophy is, “This is what I do and it works for me, so this is what you should do, too.” That’s never worked for me — in any part of my life!

  • Kassie

    I think personal experience (firsthand, or as the spouse/parent/child of a person with diabetes) does make a difference in how a medical professional cares for other people’s diabetes… but we all know it’s *such* a personal condition that how it makes a difference really varies. It’s still all about the fit between patient and provider. Jan’s point is spot-on: If the experience broaden’s a provider’s approach, it’s probably going to help me. Otherwise, it probably won’t matter (or may be counter-productive).

  • Ephrenia

    I think it is important for someone to UNDERSTAND the disease – and a patient’s reaction to it – in order to help patients cope with it. I don’t believe that means you must experience it first hand, but you do need to have dealt wih enough people who do – and LISTEN to them – to be able to pass on things that help.

    In my experience, My first two Drs didn’t UNDERSTAND. Therefore, there wasn’t much I could learn from them. Neither saw a need to send me to a CDE – first wrong move! – so I had to educate myself. I found help on this website, on Joslin website, and talked with other diabetics on the ADA website messageboards. Learning what worked for them really helped me find things that worked for me, too.

    Does my new Dr UNDERSTAND? It’s too soon to tell, but at least she’s LISTENING. and running the tests my second Dr didn’t think were necessary like an HbA1c and discussing the results with me.

  • lee zard

    do we expect that our oncologists would have had to have cancer in order to treat their patients effectively? or that our pediatrists should have had some kind of foot condition?

    i think not.

    AND i would expect ANY health care professional that i see about any condition have the experience, empathy, and understanding to provide the type of treatment that is needed for my condition (unique or not) as their patient.

    in fact, insensitivity to me and/or my condition by a healthcare professional IS a reason why i found another. one needs to be their own advocate.

  • squirrel_2

    I’ve had both anon-diabetes doctor and now one with diabetes. I find that my present doctor takes more time with me and is more willing to explain and then let me decide if We should try the treatment she has suggested. I can see where with some people it might be a handicap for the care provider could either too aggressive or not aggressive enough in their treatment. whether it would be a good or bad thing depends each person’s feelings about their own diabetes

  • Martin Turina

    Hi! I am from Argentina I am 25 and Diabetic since 18.
    I think that someone who does not have the disease, if he/she is really soaked up with matters related to it, and in constant contact with people who have it, can learn everything. Probably it’s easier for someone who live with it in is own flesh, because it cannot be avoided and besises it does not require to learn from someone else.
    What i think it can really make difference between both, is EMPATHY. Someone with Diabetes knows wich things frustate the most, wich things really don’t care. I mean, Diabetes can be only ONE of the problems of a person. Maybe someone else diabetic realizes why she/he is feeling one way, or if it has something or nothing to do with Diabetes, and besides, can tell about it’s own experience.
    However, I’d pefer someone smart, with good judgement. And, given that most of the people don’t are diabetics, we would probably find someone good among these people ūüėÄ

  • Sharon

    For me, I used to think that it was important for a physician, diabetes educator, etc. to also be diabetic, but realized that I wasn’t satisfied with them just being diabetic. They had to be insulin dependent like me. But then I matured. To me, now, I MUST have a doctor, diabetes educator, etc. who will listen to me and not threaten me; one who will not be threatened by a suggestion I give for a way to treat my disease that I can live with. I will tell you that I have fired so many of my previous doctors because I would leave their offices feeling worse than when I arrived. Now, I drive almost 2 hours for endocrinologist & cardiologist appts, because my doctors are THAT good! Neither, by the way, has diabetes.

  • spongeBob

    I’ve been to the mountain and consulted with the CDE my internist referred me to–twice! First time very constructive; 2nd time very much less constructive.

    Whatever the intensive training, whatever the certifications, the licenses enable you to treat disease, but not (necessarily) the patient! I am not saying that to effectively treat cancer, the practitioner must have cancer. That’s absurd. But to treat the cancer, heart, diabetic patient you need a working sense of the patient’s view of their disease: fears, hopes, disappointments, despair, anger, isolation, bad days, good days … the list goes on.

    Of course, what practitioner could have such knowledge, or even want to? So when you write your “advice” column or publish your “disease friendly” food recipes or do whatever else you do in the name of helping the patient, remember if you’re not a patient yourself, the best you can do is guess if you’re being helpful.

    and my original question remains: how many of the contributer

  • spongeBob

    Part 2 …

    and my original question remains: how many of the contributers to Diabetes Self-Managemt Magazine are diabetics?

    re:diabetes research. The disease has historically been characterized as a disease of a malfunctioning pancreas — cause unknown. Only until recently (last 20-30 years) have practitioners differentiated between Type 1 (bad pancreas) and Type II (the fat person disease). So I argue, if there is a stigma to diabetes research funding, it has only recently occurred. What was going on in the prior 70-80 years of research?