Romance is in the air… Valentine’s Day is coming up in less than 2 days. Are you ready? If you’re a PWD, you probably have more pressing concerns besides whether to get your beloved flowers or chocolate. As with most things, diabetes makes relationships… well, complicated. Not just complicated in the old-fashioned sense, but complicated on an emotional level as well. Andreina eloquently wrote about this balance last week when she shared her story of being married to Manny Hernandez, founder of TuDiabetes.org, and how she works on patience, love and support in her relationship with her husband.
This prompted me to put together a little survey to see what others had to say about love, communication, and intimacy. We kept it completely anonymous, so as to not embarrass anyone needlessly, and really get some good, honest answers (maybe even a little TMI?!). Even without the names, I’m sure these stories will ring very true to many of you.
We started with the elephant in many couples’ rooms: How does diabetes affect your life together? How does it affect the non-diabetic partner’s life? How do you manage the hurdles it throws at you?
“Diabetes has definitely changed our relationship,” wrote a 38-year-old woman with type 2 diabetes. “It has become more of a challenge as my self-image has diminished and we both have become obsessive about the disease and management of it. Life has changed as we knew it. The places we eat, the places we go, and the things we do. Some good and some bad.”
Another woman with type 2 diabetes, who says she recently came out of denial of having diabetes, wrote, “In this short month, I’ve lost any desire to be intimate. Is this medication? Or is it reeling emotionally from the news. I do not know. My husband has kicked into high caring mode… shopping, cooking, packing yogurt if we will be out at medicine time. I feel loved. Just not sexy. I feel old, broken, and as if I could be a burden one day. I hope this passes.”
Physical intimacy issues was a common thread through most of the responses we received. Some stated that the problems were deeply negative, others merely a nuisance. Erectile disfunction in men and vaginal dryness in women are both impacted by blood sugars, and are yet another unpleasant side effect diabetes has on our lives. In fact, one clinical study that came out last May states over one-third of women experience sexual issues, so if you do, you are definitely not alone!
The 55-year-old wife of a PWD wrote that there has been no physical intimacy for over 20 years. “Our emotional ties are sufficient for our marriage. My husband has tried Viagra and Levitra with absolutely no effect. He found inter-cavernosal injections too painful, and these were so inconsistent with the romantic mood of physical intimacy that they destroyed its value for us. The vacuum pump also completely ruined the mood and made everything seem too mechanical. My husband does not want a penile implant because he says he has seen too many surgical complications with them.”
A woman in her mid-20s with type 1 diabetes wrote that her pump, and the associated scars and marks, make her feel self-conscious about her body. “I very rarely like to be naked and will use anything I can to cover up my stomach and/or my thighs (I do my shots in my thighs). I think that takes a little away from our ‘intimacy’ because he feels like I’m ashamed of my body. I’m not ashamed of my BODY, but moreso ashamed of my disease and what’s it’s doing to my body. I have a great body and I’m proud of it’s physical qualities, but the bruising and the scars… those I hate.”
But the impact of her physical appearance doesn’t seem to have deterred her boyfriend, and she wrote about their first date: “It was after a lovely date night. We had kissed a few times, but we weren’t an ‘item yet. Standing outside, I said to him: ‘I think you should know that I’m diabetic.’ He looked a little shocked, but he smiled and said that it didn’t matter. He wanted to be with me anyway. It’s been 11 years now.” (For those of you who didn’t do the math, that means they’ve been together since high school. Now that’s commitment!)
Another twenty-something woman is more optimistic about sex and diabetes, writing, “We are still working it out, but under-bolusing for food to prevent lows or temp rates of various sorts helps out a lot. We are also trying to be more forgiving of each other if things don’t go as planned.”
But relationships aren’t all about sex, right? Relationships are also about involvement and partnerships, and staying involved in your partner’s diabetes, and including your partner in your diabetes can be an encouragement (who’s a better cheerleader than your significant other?) and much-needed break from the mental strain of diabetes from time to time.
A 33-year-old woman with type 1 writes, “I wish [my husband] would take a bit more of a proactive approach in terms of education. Most of what he knows is from me. I wish he’d look online or find blogs for support for HIM supporting ME. I wish he would be a bit more proactive in counting carbs for meals. If he makes it, it would be awesome for him to plunk it down in front of me and say ’45 grams baby!’” (I whole-heartedly support blog-reading! Send him on over!)
The 27-year-old woman with type 1 writes, “What I love about how my husband deals with my diabetes is that he keeps it as MY diabetes. He is my partner, not my boss. I still make the decisions. He knows a lot about diabetes, but he learned it all from me. He doesn’t spend his evenings reading about diabetes the way I do. He lets me be the ‘expert’. He knows what every blood sugar reading means and he know how to react to anything, but he didn’t memorize my insulin to carb ratio (yet). Somehow there is a very delicate balance there.” But she also notes that her husband probably worries about her more than she even realizes, saying, “On a more subconscious level, I know that my husband worries about me. He sometimes wakes me up during the night to have me check my blood sugar. He thought that my breathing sounded ‘different’ and wanted to make sure that I am okay.”
Almost every person who wrote in to share their story had the same overall piece of advice for couples: communicate, communicate, communicate! Talking through problems has always been the number one piece of advice for pushing through obstacles, but always in a calm, considerate way. Diabetes stresses everyone out, and it certainly doesn’t help anyone to yell or criticize.
- “You can’t know what each other is thinking unless you talk about it. Bring diabetes to the table. It’s a valid factor in many things, so don’t just ignore it,” – 26-year-old woman with type 1
- “Be honest about what you need and hope for out of your partner. You cannot assume that he/she will know everything that you know and you cannot expect them to read your mind” – 33-year-old woman with type 1
- “Expect the mood swings and find support other than you significant other to help you cope with all the demands. By taking the pressure off your partner, it allows for your partner to become more supportive and not overwhelmed and to be there when you really need them” – 36-year-old woman with type 2 diabetes
- “It says a lot about a person for good/bad if they choose to be actively involved/totally ignore your diabetes. I’ve date both, believe me, and I would never again settle for someone who doesn’t care to learn about it. I realize that this is somewhat of a burden, and to a diabetic’s S.O. this is a burden they can choose (unlike for a diabetic), or choose not. Its part of me that’s not going away, though, so take it or leave it” – 24-year-old woman with type 1
- “Educating yourself makes some of the hard times you will face so much easier. Don’t nag. It’s not your diabetes, it’s there’s. Just be empathetic and volunteer to help with anything they need. Learn to carb-count, learn about their pump, learn what an A1C is, learn pump settings and basal rates, learn how to check their blood and use a glucagon kit. While you may not ever have to know the information or use it, it’s best to know. Because when they do have a situation, you’re going to need to know. Because a lot of times even the medical staff itself doesn’t know” – wife of a 32-year-old husband with type 2 diabetes
- “Take care of yourself – healthy is sexy! Ask for help when you need it. And if you’re not getting the support you need, be patient – but not too patient. There shouldn’t be any question when it comes to your partner. They need to be all in” – 36-year-old woman with type 1
- “Be honest about it and all of the effects it can have. Be open about fears. Be sensitive to the shock your partner can feel when seeing what happens when we are low. Never take your partner for granted (that’s true in every relationship)” – 47-year-old man with type 1
Thanks to everyone who wrote in! We received over 25 responses and wished we could have published every one. Keep your eye out here for follow-up on many of the issues discussed in future posts.