I’ve had T1DM for almost my entire adult life.
I don’t hide my sensor or my pump. I never tried to hide when checking my blood sugar or injecting insulin.
I don’t make it a secret, but I think it’s far from the most important thing about my existence. It does not define me. And I try not to let it limit me!
I’m thinking about how I’ll introduce the fact of having diabetes in my motorcycle blog (or if I even will feel it necessary to do so).
Hi @MBW, interesting concept. My first question would be (non-rhetorical), why?
I ask that because I have considered this very notion before myself and I most often arrive at that question. This would include my employer, my church, any social groups and even distant family.
My logic, who needs to know about it other than my inner circle and possibly my employer? I am not ashamed of the condition, far from it actually. Everybody has some health issue or they will eventually. It’s a matter of time, whether we can admit it or not. My 2.5 cents.
I’m happy to hear you praise the question that way because I am of the same mind. I’ve thought about this.
Why?
I can come up with good reasons, why not to bring it up. It’s my private medical issue, I deal with it on my own and it’s my business.
I certainly don’t want peoples “pity”.
I also don’t want to seem special or unique or in need of additional consideration. But of course I DO need some consideration, sometimes. I might need to have a snack or take a break; I could be confused from hypoglycaemia. I might be irritable for the same reason.
It’s not anybody else’s business (until it is).
Why? So often, when hearing the diagnosis of diabetes, people’s first reaction is: “that’s it. My life is over”. Only it’s not over. Do possibly by identifying myself as a person with diabetes, living my life, some normalization will occur. Possibly, someone will think differently about themself. Possibly, someone will think differently about people with diabetes.
Possibly someone will be inspired.
Most of my friends reading the blog will already know. But others may stumble upon it, and maybe someone will feel a bit less alone.
Looks like you just wrote your blog post about it right there!
You bring up a valid point, that being your revelation and subsequent shared experience could benefit someone else who may be struggling. On that particular note, when I post on these forums it’s typically in an attempt to gain some insight from someone else or to share my own take on a given topic. Again, something I have discovered might benefit someone else.
I have done this online and in person, if I am somewhat more guarded with people I actually know IRL. The reason being, it is in fact my own personal health we are talking about.
I didn’t know any other type 1 diabetics growing up. My diabetes was frequently the focus of mean kids and meaner adults. I was never embarrassed about it but that is largely because I had a great support system at home. I’d rather tell people up front that I have diabetes than have them discover it while I’m having a low BG and them be panicking about what to do even though I haven’t needed help with a low BG in over a decade.
For anyone who has diabetes but is told that they can’t do this or that having an example to point to and say “but he does it” (even if only to yourself) can be a big boost in confidence. You may not be writing a diabetes blog but if someone who is interested in your niche happens to have diabetes then you show that diabetes doesn’t hold you back.
I have only met a few other T1Ds in my regular daily life since becoming diabetic 36 years ago … that I know of. I know we’re thin on the ground, but I suspect that a lot of diabetics keeping it to themselves to avoid the stigma means that much of our visibility only occurs when something goes medically wrong.
I decided long ago that diabetes is a major part of my life (hourly, daily, weekly, yearly), and that I won’t hide that part of me any more than I hide the color of my eyes. I explain that, no, my insulin pump is not a pager. And I tell them that the funny thing on my arm tells me what my blood sugar is every 5 minutes. If anyone asks, I tell them that yes, I can eat “that”, but I have to program my pump first.
This is an integral part of my life that I can’t afford to ignore if I want to keep it from being a burden to others by me becoming a live and in-person medical emergency. I don’t throw it in their faces, but I don’t hide it or apologize for it.
Imagine how many people have as their knowledge base about diabetes that irritatingly out of date woman in Steel Magnolias, or some idiotic scene in a TV show or movie, or their cousin’s brother-in-law who had to have his foot amputated. We need to be normal people who live normal, visible lives.
I think that we see different diabetics with different personality types (just like normal people).
Some people are really kinda open and exploratory. Part of that might include exploring other people’s perception of YOUR diabetes. Some of us are sick of hearing/being at the mercy or other people’s impressions/misconceptions about diabetes. But for some people, it can represent a exploratory process of growth.
Both are OK.
I’m super open about it. If you bump into problems, feel free to post and we can all troubleshoot that stuff. There will be both positive and negative impacts from being open.
One of the positive things I’ve encountered about being super open with people about medical issues is that I know EVERYBODY’S medical issues in town and their experiences with it. Over a long period of time, that information represents a huge body of knowledge.
When you are open with people, people are open with you. People will talk to you about diabetes, but people will also talk to you about the struggles they face related to HIV and cancer and Parkinson’s and bipolar disorder experiences. I find that super helpful in exploring what experiences are unique to diabetes and what experiences are kinda mutual to everyone’s experience of illness. It helps me better define what is specific and unique to the experience of diabetics versus other illnesses.
Another positive thing is that I see some protective effect. Everyone in town knows I’m diabetic. If there was ever a terrible accident or medical event, people just KNOW that I am a diabetic. That can be beneficial.
People come to me to have ‘big picture’ discussions about the experience of illness. That might be a positive or a negative, depending on who you are. There’s a lot of listening involved in that, but it’s part of the process in troubleshooting different issues that confront people. People are curious about my experience and how it relates to/might be useful to understanding their experience.
There is a secret club made up of people with chronic illnesses. Those people call me to offer me jobs. They are NOT just diabetics (although I currently work for a T2).
Some people might use your illness exploitatively. That will make you mad, but if you are confident in yourself and your abilities, you’ll work it out.
People who are ‘open’ like big picture conversations about ideas. You should be prepared for some of that when disclosing diabetes because it facilitates conversations fundamental to the experience of being a human. Being open about diabetes will begin conversations about big ideas with lots of other people in town about illness, in general. Some people like that stuff and it’s good for them. It’s a personality thing. You learn from that stuff. In general. I’ve learned a lot about the landscape that is the experience of chronic illness. Lectures: Exploring the Psychology of Creativity - YouTube
Conversation with others can help facilitate understanding and creative problem solving, which is very important to us as a community. We do that on this forum everyday. We have all helped advance the paradigm of illness and drive technological development.
One negative thing is that I have a lot of relationships with people with chronic illness and a lot of us face certain hardships and have a higher likelihood of dying young and certain financial problems. People will call you to talk through that stuff. Those are tough conversations. But, overall, everyone will get sick in their lifetime, so the experience of illness is a very unifying one. I’ve developed great relationships with fascinating people just by being open about diabetes. I’m a fan of it.
Great photos of Grand Marais! You are relatively near my location. 
Duluth will be doing Finn Fest in July if you have the chance to make it there some year. I expect to bump into a lot of diabetics there because Finland has the highest incidence of T1 in the world.
This is perhaps best for another discussion, I do not want to hijack this good thread, but I did not know this and it’s fascinating - another rabbithole, I do wish I had more time for these things…
Indeed! Thunder Bay is Canada’s smallest “BigCity” and I’ve been here about 30 years. There are many Finns here including my wife.
I expect that I’ll be involved in something at the Duluth Finnfest time; since retiring I’m busier than ever. I’ve got a triathlon coming up as well. But the trip through the Yukon snd to Northwest Territories, by motorbike and solo, comes next.
I think I’ll comment on my having T1DM in my next post or Tuesday’s perhaps. It is, after all, part of my identity, part of my story, and to a small degree, part of why I’m even doing this crazy adventure!
Another Grand Marais tidbit (I hitchhiked and hopped trains from the Twin Cities to GM while in college. - Lovely town) Anyway, there is a carpenter from Grand Marais who is the only non-Frenchman working on the restoration of the Notre Dame in Paris - using Medieval techniques and tools! Pretty cool. (I wish I could remember the guy’s name, I could do that obnoxious "do you know…?)
Just my opinion but I believe that my fellow employees, any social group I am in, all sports teams of which I am a member (very important) and friends should all know that I am a diabetic. This is definitely not for sympathy or anything like that but because it is very important to MY good health. If anything should happen and they know that I am a Type 1 diabetic, then they are much more likely to be able to help than otherwise.
So, in a previous life I was a high school teacher. I used to start the school year off by telling my students about myself, which included being a T1D. Far from being the only interesting thing about me, it is a fact of who I am. I also told them about my travels and other good bits about who I am. I would circle back to the T1D and say, “if I’m ever acting weird (weirder than normal) go get the nurse.”
One day when I was 7 months pregnant, I was doing exactly that. My BG was 19 and I couldn’t speak or put together coherent thoughts. The students finally snapped to it, got the nurse, who fed me orange juice and crackers until I came out of it.
All of this to say, people should know you are T1D. It could end up saving your life one day. This doesn’t mean that you have to constantly mention it, but it should be out there in the universe.
Ok. Off my soap box. I am excited for the motorcycle trip! Cheers!
I would change that to a “part of who I am.” Everyone who knows me, my family, at work, at church, and most certainly the group i bicycle with know about the diabetes. I have had a few hypos on bike rides and took care of them on my own, sometimes without missing a pedal stroke. Sometimes I have to stop. My friends will stop and I usually tell them it’s under control. That I will stay here a while until I can go again. If I were to actually pass out, they would render aid, call 911 and make sure the fire ants don’t eat me.
Same. – I like how you said, it’s just part of who I am. 
It’s a fair argument, and I would say the “need to know” is unique to everyone’s particular circumstances. In your case, you divulged it and it turns out to have been the right decision. Were I in your particular situation, I might have made the same call.
I think the answer to the question is: given your very specific case, determine for yourself whether or not a person, or group of people has a need to know. I would expect everyone to be different. It seems to be a very unique decision we all need to put in perspective and make accordingly. Finally, I do wear a wrist band that has an indication on it in case I am ever out without my wife and something happens. Maybe that is my way of bridging the information gap.
VERY important! I know some people who have tattooed on their wrist.
Yes, that’s why NovoNordisk and stuff are located in Denmark. They produce a ton on T1 diabetes research and publications up there. Our heritage | Novo Nordisk | Driving change
I often wonder if that is why MN has a lot of diabetes advocacy - simply because there are a lot of T1s located here.
@MBW, reach out if your ever in the area and I’ll drive up for dinner. I gotta give you the spiel about Duluth. They are calling it “the Riviera of the North,” since the end of covid. I don’t know what happened, but everyone has been moving there since remote work became a thing. The price of hotel rooms is through the roof. It’s really strange because it used to be just another ‘drunken sailor town,’ along the North shore. Now, it’s the hot new place to be. It’s stunningly beautiful and all, but it’s hard to imagine living there - they had a hard freeze and snow, like, 3 weeks ago.
@artwoman, I’ve heard of that guy! People are talking about him around town. I can’t remember his name either. Minnesota carpenter helps rebuild Notre Dame Cathedral roof — with medieval-era skills | MPR News
There is a real presence for hand wood working here as an art form. The American Swedish Institute has a great exhibit coming up for that. I like that stuff because, an an epileptic, I’ll particularly scared of power tools. Leaving Your Mark: Stories in Wood - American Swedish Institute If you ever get the chance to see the Stave church in Fargo, I recommend it. The Moorhead Stave Church - Historical and Cultural Society of Clay County Lately, all the rage in woodworking has been building saunas. Sauna Days in Duluth - YouTube I like saunas because diabetes makes my circulation bad and they are great for feeling better in the cold. All diabetics should have one. Finnish cultural tradition of sauna gains steam in Minnesota | MPR News Survival in Duluth depends on having sauna access. Pier B Flyover | Duluth, Minnesota - YouTube
I play ice hockey with fellow old people and have no problem with publicly checking BG on the bench, walking out of the bench area when needed to fuel up with glucose gel, or parading around the locker room to the showers with my pod and cgm stuck to me.
It certainly does not define me, most people either don’t notice or don’t comment. It is interesting to me that when I leave the bench area to gobble glucose gel there are only a handful of people who say “Everything OK?”. I’d say 95% of the people there (a mix of long time friends, newish friends and acquaintances) assume that I’ve got it under control and don’t comment.