A Guest Post by Allison Blass
Last week, I wrote a post here about my new relationship with my boyfriend and how I was curious about how to educate him about diabetes without totally overwhelming the guy. Besides the little he had seen me do — test my blood sugar and wear an insulin pump — he was pretty clueless to the whole disease. So I sought out the help of my wise diabetes community for some pointers in how you had educated your significant other about diabetes. Thanks to everyone who wrote back, via the blog and by email. I really appreciate all the feedback!
It seems that the general consensus is… drum role please… to go at a pace comfortable for your partner.
I think Laura said very well when she wrote, “There are layers of truth. I do let the Type 1 diabetes fact be seen right away with the meter and the pump, but I also let people believe that I’ve got it all under control. Then, very slowly, if they’re observant and if I trust them, they begin to learn that “well-controlled diabetes” is more complicated than they thought.”
Boy is that ever true! I suppose you don’t want to knock someone over the head with too much medical jargon. Even learning to live with disease first-hand is an ongoing process, so we can’t expect a new person to be at an equal level, especially if we’ve had it for ten, fifteen or twenty years.
Pamela pointed out that our significant others will have different reactions to the information. Some, like Jen, are “intellectually curious,” while others, like Pamela’s partner, is “anxious.” Pamela wrote, “I tend to share only a small amount of information. At the same time, he’s very supportive, and will grab anything for me in an instant. So he doesn’t really ask [about] my A1C results or new technologies coming down the pike, but, well, he loves me and cares deeply.”
Awww.
Okay, but what about actual resources? Jen wrote that her partner has the book 50 Secrets of the Longest Living People with Diabetes by Steve Edelman and Sheri Colberg, which she read and says it helped her to understand quite a bit. I own that book, so I’m definitely considering lending it out.
I also asked some friends on Twitter and TuDiabetes for recommendations. Besides 50 Secrets, other books that were suggested were the Pink Panther book (which is actually called Understanding Diabetes, by Peter Chase, but I’m pretty sure no one calls it that!) and Think Like a Pancreas by Gary Scheiner. There are also social networks that welcome the partners of people with diabetes, like TuDiabetes.com and there is a whole host of experts here in the Diabetes Online Community.
One thing I learned from reading the comments and talking to people is that while it’s important to not overwhelm the person with too much information, it’s also important to gauge how important diabetes is to your partner. Are they asking questions? Do they remember what you tell them? Are they impatient with your low blood sugars or unreasonably critical of your high blood sugars?
Jonathan wrote, “My current companion is the child of a T2, so knows a lot, but wants to learn more. She asks lots of questions, which I answer as best as I can. I try to encourage her curiosity. I don’t think there is a right way or a wrong way. But, it is necessary for the person to be interested. In all the years of my marriage, my ex never did any independent research on diabetes, only came to the doctor with me a couple of times, and mostly focused on my lack of control and poor eating habits (which she was right about), but never really took the time to try to understand how hard what we do really is.”
I have always been open about my life with diabetes. If someone asks, I’ll tell them. I’ve been lucky in that I’ve never been discriminated in my personal or professional life. Most friends and colleagues know within the first couple of meetings with me, and so did my boyfriend. But it is one thing to say, “When my blood sugar is low, I need sugar, and when it’s high, I need insulin,” and another thing to actually get into the specifics of what happened and why and what you do about it.
The moral of the story, I suppose, is that each couple is unique and that it’s important to have a “go with the flow” personality. Getting bogged down with the details of diabetes may distract your significant other with how totally AWESOME you are — and who wants that? But there are dozens of books and resources that will help explain the nitty-gritty of diabetes that sometimes I don’t even understand! As long as you cover the basics — like how to treat an emergency — fairly early in the relationship, the rest of it can come as naturally as finding out that you don’t put the cap back on the toothpaste.
Thanks for opening your heart, Allison. With Valentine’s Day right around the corner, I was hoping that others might also like to share their “diabetes love stories” here. Let us know how you handle things with your non-diabetic partner, or if both of you have the Big D, how does that factor in to the relationship mix, which of course = daily grind + touch of romance?
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Jason didn’t really know anything about D when we started seeing each other. He knew I had it from square one, but the education and understanding was slow, and I would say he’s still learning, 6+ years later. He wasn’t intellectually interested, but I think that’s because he didn’t realize how complicated it really is. I don’t think there’s any inherent benefit to giving someone all the intellectual stuff upfront. If they seek it out, that’s just because that’s how they cope (I had a BF like that in my 20′s), but in the end, I don’t necessarily think that’s a good gauge of their interest in your well-being or ability to empathize. The real education comes from experiencing it, and that takes time. It’s like giving your new SO an autobiography, and expecting him to truly know and understand you from that. Maybe he’d have some new information and insight, but no one really knows anyone unless they’ve spent lots of time with them under all kinds of different circumstances. Living with diabetes is so immensely complex and layered, to know what it means to live with it requires actually living with it. No one expects a newly diagnosed family to take home their books and pamphlets and after having read all that, actually ‘get it’. They live with it, go through the anger, denial, etc., and in time, they understand it. It’s not something you can rush, people get their on their own timetables. It’s no different for an SO.
[...] wrote a follow-up guest postt o the one on relationships that I wrote at DiabetesMine last week. I received a lot of wonderful [...]
I wrote a story a few years ago about hardly ever telling dates or friends about my diabetes until I began to date the man I married.
We’ve been married seven years now and he’s learned a ton, tested his own blood sugar to see what it’s like and supports me at every turn. Like everything else in life, trust your gut how much to divulge and when, and all the cues you pick up from the one you’re with. And maybe you’ll get a chuckle out of my story: http://www.diabetesstories.com/love_and_the_juvenile_diabe.html.
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I love Laura’s take on it. Couldn’t be better said.
“Getting bogged down with the details of diabetes may distract your significant other with how totally AWESOME you are ? and who wants that?”
You hit the nail on the head with that one Allison…and that’s why it’s MY disease/problem/fact of life (choose your terminology). All I ask of my partners is to understand that I may ask for help once in a while (this is probably “standard operating procedures” for other people, but for me, having diabetes has distanced me from people in the past, because I believed that no one could understand how complicated this disease can be (exercise, food, eating at irregular times, long-acting insulin, fast-acting insulin, unpredictability of daily activities). At some point, we all will find our mate, and that person will be willing to help us…not “take control”, not “not care”, but will help and support, and know when to let us take care of ourselves.
I thought that this was refreshing. While I don’t have a significant other, it’s always good to know how other people manage these kinds of problems.
Thanks for sharing.
Diabetes is my problem, not my partner’s. When it comes down to it I’m alone in this thing — it’s my burden and my responsibility. If I could do it all again, I would keep my mouth shut and give my partner only the bare minimum information. But we’d been together 6+ years when I was diagnosed and the shock of becoming a type 1 diabetic in my twenties led me to prattle on about the various horrors of complications, etc.
I found out only after my grandmother’s death that she was an insulin-dependent diabetic for most of her adult life — she kept it very private. Her kids didn’t know how serious it was, they thought it was “a touch of sugar” as they used to say. I’d follow her example and choose to keep it private if I could go back and change things.
Lauren, well said–it’s our problem and our responsibility indeed. I do think keeping that line very clearly drawn helps our relationships stay balanced and fair. However, I also think it’s best to have my partner, close friends and family have some idea of how I feel and what makes me tick, just as I want to understand them, so over the years I’ve come to share and teach and allow myself to be seen a little more than I did in my younger relationships twenty years ago. I’m trying to find a balance which is both self-reliant and truthful.
About 30 years ago, I met the most wonderful woman at Joslin Diabetes Clinic, of all places. She lived in Ohio, me in Boston. We both had Type 1 diabetes, and both were on insulin pumps, which back then were the size of a Daniel Steele novel.
So, I fly out to Ohio to spend the week with her. Being the 20 year olds that we were, love turned physical, in her parents house. Suddenly, I had to get up out of bed to use the facilities. I grabbed the nearest insulin pump, and ran out. Needless to say, I grabbed her pump instead of mine. I ripped the infusion set out her stomach, and blood squirted everywhere. I don’t know if her mother ever figured out how everything got blood all over it.
I don’t know what happened to her, but I still laugh at this today. This is true love (and humour) that only another person with diabetes would understand!
I am married and was diagnosed last year. It was tough going for a while but now I am getting the hang of things. Unfortunately, my husband is very fearful of the big D and doesn’t talk about it. I also have thyroid disease and should have known he would be no better talking about diabetes than he was talking about my thyroiditis. Some people just can’t face the illness head on. I am lucky to have girlfriends watching out for me. I have to accept my lot in life and accept that I married a partner who will read the info but never speak of it. I can’t change his coping style, I can change my reaction to it.
I’ve had Type I diabetes for 41 years, and in January went on the OmniPod insulin pump. Love it. My A1C was 6.9 this time and with
more experience, I know it will be lower next test.
Heres my problem. My partner of 8 years know about the diabetes, goes to the Dr. with me, and has saved my butt several times when I was so low I couldn’t help myself. But lately he gets so mad when it happen he starts yelling “You’re not taking care of yourself again” and tosses me an oj to drink. After that he storms around with the worse attitude ever.
I know he’s frustrated and I try to explain I’m still trying to adjust to my pump, finding the right settings to handle an active day and a slow day. I test my blood almost 10 times a day to be sure that I’m in a normal range. Before the pump I only tested 3/4 times a day and took two shots of Reg and NPH a day.
He doesn’t seem to realize that adjustment takes a little time and having a low is no fun for me either. Please can someone tell me how to handle this situation. I think he may want to end our relationship because of my diabetes. And quite frankly, if he can’t handle my diabetes, perhaps that would be best. Anyone out there have any suggestions?????
[...] wrote a follow-up guest postt o the one on relationships that I wrote at DiabetesMine last week. I received a lot of wonderful [...]