Today: Taboo is Being Kicked Out the Door—a Must, and Difficult, Read.

What you are about to read is delicate in nature and should be viewed with both a mature and discretionary attitude, it may not be for everyone and certainly parents should read before sharing with children of appropriate age range.  I’m writing about it because ‘not talking about it’ does not make it go away and it’s something that will impact 35-50% of those with diabetes…….whether we care to talk about it…..or not.

Taboo’ is a funny little word.  Look it up and the dictionary will tell you the following: proscribed by society as improper or unacceptable: Taboo language is usually bleeped on TV. Synonyms: prohibited, banned, forbidden, proscribed.

Seriously?

I am attending the American Association of Diabetes Educators Conference this week and I attended an event sponsored by AMS which featured my good friend Benno Schmidt and a fellow collaborator, Janis Roszler.  What Benno did at this meeting was to take taboo and throw it out the window.  His courage was beyond commendable, it was downright brave as he put himself completely out on a ledge and he did in the name of helping others with diabetes; because he shared about himself.

Benno is an award-winning journalist who has reported the news from around the world, and he has done it with T1 diabetes.  He has interviewed people with diabetes, he has reported on diabetes from places as far away as Haiti, and he has an entire reel-full of stories he has reported regarding diabetes.

But Benno has a secret that he has had it for ten years.  Benno, as many people with diabetes, has suffered in silence with erectile dysfunction.  He recently had a penile implant and Benno will be sharing his story to help many others out there who suffered like he had………..in silence and alone.

Sexual complications of diabetes are real.  They will not go away because we do not discuss them.  Our children very well may face them but you do not see sexual complications (yes both male and female) on many of the lists that note complications of diabetes, yet, sexual complications—-are very, very real.

Now as a parent, if you are reading this and saying “Great, something else I did not know about”, well, to be honest that would make me feel this article is completely worthwhile.  Because ‘not knowing’ will surely NOT MAKE it go away.

And whether we like it or not, discuss it or not, or even believe it or not; at some point sexual relations are going to take place and if we just believe that the wonderful sexual desires that we all feel should never be discussed, than we will also not be able to realize that the lack of it is an issue that MUST be tended to and discussed as well.  Our body, in all of its glory, is masterful at communicating many things and sexual communication is one of them; and because of nerve issues and other aspects that allow the body to work properly can be completely thrown into disarray by diabetes neuropathy, it is something we must be aware.

If your child was diagnosed under the age of ten, for example, by time they reach their twenties; it may or may not become an issue.  Not only for the biological reasons, but have you ever imagined what it would be like to be intimate with a pump on you or a CGM?  Or becoming intimate for the first time and stopping because one ‘must check their blood sugar’—imagine how that plays out?  How unfortunate that our kids have to deal with some aspect of diabetes even within the confines of enjoying that absolute intimacy that EVERYONE wants to experience.

There I said it.  Because my dear friends, as much as this all may be hard to read about our kids, it is by no means a picnic to write about it either.  I’m a dad too.  Thinking of our kids, HEAVEN FORBID, as sexual beings is well…….taboo…..isn’t it.

My friend Benno is going to be traveling the US, courtesy of AMS who creates the penile implants (which is only one of many, many, treatments) as a (disclaimer) paid spokesperson, and I applaud them for making that happen.  Honestly, there probably is not enough money in the world for a person to stand before a crowd and discuss their sexual dysfunction and Benno, who is master at communication, quickly makes his audience feel at ease in discussing something so personal and educates beyond measure.

Now that I have totally disrupted the comfortable-ness of your day, what do we as parents do about this wonderful knowledge I shared today?  Well for one thing, be aware. I cannot imagine that you would sit with your child tomorrow, at an early age, and discuss this but you should be aware.  I would love to see sexual dysfunction listed on EVERY list of complications because in some cases it is more likely to happen than other complications.  Depending on the level of communication you have with your child, this knowledge is good to have and good to know and you can choose how to address it.

AMS, the company that sponsored the lecture I attended, will have Benno’s story on their website shortly; but they also have much information at their website at www.edcure.org .  It is a corporate site but it answers many questions. Start to do some homework about it; follow Janis Roszler who is an expert in this field on Twitter @dearjanis; google her name and video, she has a few of them.  Also remember that diabetes impacts females as much as males and following Janis and watching videos she is in will help better understand.

This was NOT an easy column to write today.  I’m a parent also, but sticking our heads in the sand will not make this go away.  We need to understand it, we need to investigate it, we need to learn.  It probably will never be discussed at the dinner table but knowledge can at least take some of the sting out of something many just think should never be discussed…….and should remain taboo.  Sorry, not on my watch.

I am a diabetes dad.

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