Blogger Round Table Session 5: Type 1 Diabetes and Romantic Relationships

Moderated by Allison Blass

When you have diabetes and are in a committed relationship with someone, diabetes is bound to come up at some point. The way you and your partner handle diabetes can have a significant impact on your relationship and also your management. This month, the bloggers share their insights on how to approach someone new about diabetes, how to handle its impact on intimate moments, and what kind of advice you can pass along to your significant other.

When starting a new romantic relationship with someone, how do you approach telling them about your diabetes?

Scott J: I married my high school sweetheart. When we first started dating it never came up as an obstacle, but just part of who I am. As very young kids I don’t think either one of us really paid it any attention.

Allie: Who brings up medical conditions when first starting a relationship? It’ll come up eventually. Where’s the fire?

Kerri: When it came to dating, I wanted guys to know up front that I was diabetic. There are plenty of people out there who are accepting, supportive, and caring when it comes to diabetes. But there are the few who aren’t, and I wanted to know what kind of man I was dealing with right off the bat.

Scott S: In general, I suggest not hiding it, but also not making a point of promoting it either. It’s best to show that while it’s something you have to deal with, it’s also not the core of your existence. For example, if you’re going out to dinner, there’s really no way to hide the need to dose insulin with a meal short of leaving. I generally tested and dosed, and if the question came up, which it usually does, I mentioned that I had juvenile diabetes which requires insulin to be dosed whenever I eat. To determine the correct dosages, I also need to test. Sometimes, that leads to a deeper conversation on the subject, other times, it finishes that conversation.

With your current relationship, how did you tell your partner about your diabetes? How did he or she react?

Amy: He is my very best friend in the world, and we had already been together “forever” when I was diagnosed in 2003. He was extremely supportive. I don’t think it ever occurred to him that he would “lose me” over this. It was just another one of life’s major obstacles we would face together.

Manny: I was very open about it in spite of being freaked out by the news. She was beyond supportive. Andreina is a big reason of why and how I changed my habits. She was there to help me and reinforce me, without becoming a pain in the rear.

Kerri: My now-husband and I met through our old jobs. My pump was clipped to the waist of my pants and he noticed it. “Is that an insulin pump?” “Yes. I have type 1 diabetes.” “My friend’s ex-girlfriend wore one.” Pause. “So what time are you off work?” No problem. And here we are, four years later, newlyweds.

Bernard: I knew my wife fairly well before we started dating, so she already knew all about it. She took it well. It didn’t change our relationship. After we were engaged, Jackie attended a three-day diabetes course with me at Joslin. She wanted to know all about living with diabetes, including what it might do in terms of shortening my life. I think she wanted to know I was going to be around for the long term–that was about 16 years ago.

Scott: My partner is a physician (a pediatrician), so the reaction really wasn’t a big deal, although I think the burden of living with diabetes came as a slightly bigger surprise. I think diabetes management sounds a lot easier theoretically than it proves to be in reality, even for doctors!

Have you ever been rejected or afraid of being rejected because of your diabetes? How did you overcome that?

Allie: Rejection is a blessing. I have never been rejected for my diabetes but suggest finding an animal lover. They tend to be more understanding and adaptive to the fluctuations in blood sugar. An understanding mate is less likely to head for the hills kicking and screaming. I can’t afford that kind of volatility on the home team.

Kerri: I have never been rejected by a romantic partner because of diabetes. It may be just luck, but I think it’s more the fact that I don’t leave room for rejection. Diabetes is not my defining quality, it’s not the topic of every conversation, and it doesn’t dictate which way my world is spinning. It’s simply a part of me. Love me? Love my diabetes.

Bernard: Nope. I’m very open about diabetes at work and with people I know. I may be a shy in other regards, but diabetes impacts too much of my life for me to keep it hidden.

Scott: Not really, when I was dating, diabetes really was not too high on my list of concerns. I was more worried about the other, normal things that everyone worries about, which I think is pretty normal and typical.

Many magazines talk a lot about sex, but most magazines don’t talk about sex and diabetes. How does diabetes, like fluctuating blood sugars or an insulin pump, impact your sex life?

Amy: Well, having to fuss with checking blood sugars in intimate moments is not all that much fun. I’ve been low a few times in intimate moments, which kind of spoiled it for me. I also wear the OmniPod, which can press into my skin uncomfortably during intimacy sometimes. But overall, I really try to block out thinking about my diabetes when it comes to feeling sexy. Sex is like a little vacation from all life’s day-to-day bothers, right?

Scott J: It can be challenging to get in the mood when my blood sugar is not in range. High blood sugars don’t always take the wind out of my sails, but low blood sugars are a definite “stop and treat” thing. I have had to issue a “rain check” on occasion because I just didn’t feel good. My wife is the most understanding partner in the world and I very much appreciate that. I would say having to work around the kids presents more of a challenge than working around my diabetes.

Kerri: A strong sense of self, combined with an honest and supportive relationship, make all facets of diabetes management easier. That being said, it is important for me to be able to talk about all the different bits and pieces, so to speak, that come with a sexual relationship and diabetes. I am able to talk openly about my diabetes with my now-husband, including our comfort with the pump in our bedroom and explaining symptoms of low and high blood sugars. There have been moments of intimacy that were interrupted by low blood sugars or impacted by high ones, but being able to talk about everything makes these moments fleeting. Even though we’re aware of it, we’re able to focus on one another instead of diabetes.

Bernard: For a long time I didn’t want to use an insulin pump. One of the reasons was because I didn’t know it would mean to my sex life. Since then I’ve found that having a pump doesn’t get in the way at all. I usually disconnect it. It’s important to remember to reconnect afterwards. I’ve only forgotten once. I woke up around 3 a.m. with a high of 450 mg/dL! I’ve found that my libido is affected by low blood sugars. High blood sugars don’t have as much of an impact, though they tend to make me sleepy. “Not tonight dear, I have a high.”

Did learning about complications change your relationship, either in your current one or a previous one?

Amy: I think we’re a little in denial when it comes to complications. I work very hard to maintain good control and a good A1C, and we just assume that means I’ll never experience complications. In my rational mind, I know it could still happen to me despite my diligence with my diabetes, but we both want to believe that my diligence will pay off.

Scott J: I think that when my wife learned about the possible complications of diabetes we were both so young and invincible that it didn’t really change things. As we grow older we both appreciate the gravity of those possibilities a bit more and work harder to manage my diabetes as best we can. The frustrating and scary part of that is when I’m trying very hard to manage and still can’t pull off the ideal blood sugars or A1Cs.

Allie: Life, in general, changes our relationships. Complications, diabetes or any other type, present creative challenges. Relationships are a team sport. Your partner’s resourcefulness can cause him/her to rise to the challenge or drag down the team. Keep the scorecard handy and remind them this will be on their permanent record.

Bernard: No. My wife is very aware of the complications and we talked a lot about what these might mean before we got married. That may be a talk we should have again. Big catastrophes like blindness are obvious conversations. But what about gastro paresis or foot issues? These do have an impact and are worth discussing.

Gina: No, we got married!

How do you work to make sure that diabetes doesn’t put an extra strain on your relationship?

Amy: We have fun. We go out to dinner together. We’re both athletic and we work out a lot. We play with our children. We put our efforts into building a happy life for ourselves and our family. If you do that, then the diabetes doesn’t seem so awful.

Scott: When I’m feeling crabby or snappy I try to be aware of what my blood sugar is–that can affect my mood more often than I like to admit. I also try to keep my wife aware of any frustrations I’m dealing with, as that helps her understand my state of mind. Diabetes does inject mood swings into any relationship. Sometimes the best we can do is to be aware of that, and in heated discussions try to step back and ask if that is playing a role. We also went through a very challenging period before my diagnosis of depression (which is very common when living with diabetes). I was a real jerk and give my wife a lot of credit and respect for putting up with me. She helped me see that I needed help and helped me through that very difficult time. It would have been easier for her to leave, and she would have been right to do that too.

Gina: My husband is a reporter so he is always asking me a lot of questions. This is a good thing. The more he knows the more he is aware of what is going on. This way we are always on the same page.

Kerri: Doesn’t everything have the potential to strain a relationship? I make sure that diabetes is not the reason we do things, or the reason we don’t do things. I work hard to keep myself in good health. But you know what? He loves me. And I love him. We work through the tough parts, hold each other often, and laugh whenever we can.

Bernard: I try to make sure my blood sugar doesn’t go too low. My wife has had to give me glucagon shots and I think that’s a tough job to ask a spouse to do. I know that lows scare her. She’s worried about me hurting myself or even others. Thankfully my CGM has helped a lot. Though even before that, by taking care of things I’d managed to avoid severe lows. We’ve also had to work hard at driving. If my blood sugar is low, she’ll drive. If it drops while we’re in the middle of a trip my wife takes over the driving. I also test about every 90 minutes on a really long trip. Again having the CGM is a big help, because we can both check my blood sugar and the trend at the press of a button.

Do you prefer working with your partner in your diabetes management or do you prefer taking care of things independently? Why or why not?

Scott J: I think a healthy mix works best for me. I do not work well with micro-management, and would go crazy if she asked about every blood sugar or insulin dose. But when I’m frustrated it does help me to vent and talk about it. My wife is a fixer (like me), meaning she wants to be able to do something to help fix the problem I’m dealing with. Diabetes is often much more vague than that. There’s usually not a “thing” that can be done to “fix” it. That can make venting difficult for both of us! But it helps me to talk about it, and it helps her understand the complexity of living with diabetes. That is good for both of us.

Allie: People who fall for people with diabetes can’t help but be curious. The nature versus nurture debate qualifies a potential partner for the test of time. If they’re determined to learn the ropes, they’ll study, cheat, or use any means possible to get it. Give it time and your partner will become an integral part of your diabetes management…whether you like it or not.

Gina: When I tried to do everything on my own I became very distant, not only with my husband (boyfriend at the time) but with my family as well, and that put a strain on all of my relationships in the past. Now I am more open to help and suggestions. You don’t have to be alone if someone is willing to be there and help you along the way.

Manny: I love working with my wife in my diabetes management. As a matter of fact, everything I learn I teach her. She knows about diabetes (mine and diabetes in general) almost as much as I do. I think her being educated about diabetes and an integral part of my management increases the odds of having better control. Four eyes better than two, know what I mean?

Kerri: Diabetes isn’t this “separate thing” that I keep locked in a box and only grapple with in privacy. Diabetes is an open and constant part of my life, something that touches so much of my everyday activities. I test before meals, wear an insulin pump, and carry juice with me everywhere I go. Pretending it’s not a part of his life, too, is foolish. I prefer to have diabetes as an open, discussable part of our relationship. It’s my diabetes and my ultimate decision, but we work through it together.

What advice do you have for the type 3 diabetic [this term is sometimes used to describe those in some kind of relationship with a person with diabetes]?

Scott S: Well, type 3’s include a variety of different people including significant others, parents, siblings, friends, relatives, etc. As far as significant others, I would offer this suggestion: It’s not your disease, it’s your partner’s, and offering unsolicited advice or suggestions are, in my experience, seldom helpful and may even be just ignored. Just remember that it’s easier to offer advice, but actually living with a chronic disease is easier said than done and many well-known doctors struggle to follow their own advice! However, asking how you can help, if at all, is a much better way to approach an issue. Perhaps attending education classes with your partner, if they’d like you tagging along, might be a way you can make sure you understand what’s involved.

Manny: Be supportive, but be patient. Educate yourself, join online communities where others talk and discuss about diabetes. This is a very personal condition but at the same time it’s tough to live with on your own. Make sure you are there to help and support, not to become the Diabetes Police.

Kerri: Be patient and understanding. Be loving and supportive. Keep the lines of communication open and ask questions about things you don’t understand. And then realize that this is good advice for any relationship. Diabetes or not.

Amy: Love and trust go a long way toward diminishing anything negative in your life.