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Posts from the ‘Relationships’ Category

In Sickness and in Health: My Partner Has Diabetes.

A week or two ago, I received a message from a reader asking about the influence diabetes has on my marriage.  I took to Facebook to get some broader feedback, but the question forced me to drop into the weeds to see how my diabetes touches my marriage.  This will be part one of a two part post, with today’s focus on the people in a relationship who are in a relationship with someone who has diabetes.  Read yesterday’s post here.

As the person in my marriage who hosts diabetes, I struggle to see things from the other side.  Which is why I’m really grateful for the partners of PWD who offered their take on diabetes and marriage, because it’s some great insight on what diabetes looks like “from the other side.”  Whether diabetes was part of the family before the wedding or came into effect after the vows, diabetes can add some intensity to the relationship equation.

Brian “married into diabetes” and shared some thoughts with me. “[My wife] Laura was diagnosed really early in our dating relationship, so it’s something we learned about and have always dealt with together. It certainly tested and proved our bond in the beginning. Now that we’ve been married (almost) six years, it’s simply a part of our lives.  I’d say the biggest struggle for me is that we generally are partners in everything we do. But with diabetes, no matter how supportive I am and how much I try to help, we’re never really partners because it is always hers to deal with. No matter how much we confront it together, she is always facing it alone.”

A female friend who wanted to remain anonymous said, “My husband has had T1D for 25 years and we’ve been married for 9. Diabetes doesn’t necessarily affect our marriage in a tangible way. It’s an underlying current. It’s little things like having to stop for juice 10 minutes into a family road trip, wondering if he’s cranky because he had a bad day or if he’s high or low, or whether the insulin pen he left on the kitchen counter is the long-lasting one or the one he should have taken to work. It’s developing the ability to know if he’s low simply by the look in his eyes. It’s understanding that he always gets low when he mows the lawn. Other than the absolute horror show of having to deal with our insurance, I feel like we do a pretty good job of not letting it affect our everyday life. But we also try to understand that, no matter what, it affects his everyday life.”

Meredith is married to Harry (who has T1D), and they have a daughter close to Birdy’s age.  Meredith said, “It makes me worry. Not just worry about the future, but everyday things. When Harry goes on a business trip or I am away from him at night I worry about low blood sugar. He doesn’t always hear his alarms at night and so I worry about what could happen when I’m not there. I also worry when he works out (which you know is often). If I text and he doesn’t answer or if he’s gone longer then I think he should be my mind almost always goes to BS problems. I still have the regular spouse worries, like normal accidents, but his diabetes adds to that and I’m already a worrier. I think it drives him crazy.”

I’ve thought about this before, the whole “what if it was Chris and not me who had diabetes.”  I know I would nag the absolute shit out of him and would also worry a lot. That’s my role (in life?) – to worry.  And if someone other than me was living with diabetes, I’d worry incessantly about them.  Preferring to have diabetes myself isn’t heroic, but selfish because I’d worry myself into a stupor if it were anyone other than me.

Another woman, who asked to post her comments anonymously, refers to her husband’s diabetes as the third wheel. “We often call [his] diabetes the third wheel in our marriage. It’s always there and challenges our relationship often. [My husband] has a very different demeanor when he’s high, which requires a lot of my patience and to be honest- with two kids under 4, I don’t have any extra patience. So I’m not as kind and forgiving as I should be.”

Sometimes both partners have diabetes, which can add an extra layer of both understanding and of stress.  Kelley was married to someone with type 1 diabetes, and the influence on their relationship was not entirely positive.  She said, “Type 1 very much strained my marriage of 11 years to another type 1. He had hypoglycemia induced seizures along with hypo unawareness. He never wanted to wear his sensor, and it got to the point where I would refuse to leave our sons with him alone for long periods of time. I made sure both of us had insulin and supplies, I made sure our blood work was done, that alcohol wipes and tape were on the shelf where he liked them, and that there were always 2 glucagon pens in the house. I was the one that would argue with him and force feed him glucose gel or tabs, and the one that called 911 if things went too far south for my nursing skills to handle.”

“It caused a lot of resentment and frustration, and made me feel thankful for my own diabetes being easier to manage,” she continued.  “Now that we are divorced, our oldest son has taken on some of the burdens I used to shoulder, and has had a cell phone since the age of 7 to help him with all of this.”

When I was growing up, I didn’t know many other people with diabetes, but in the last 12 years, I’ve made up for lost time.  Which  means I have a lot of “diabetes friends,” which in turn produces a lot of love and a lot of worry.  I’ve never dated someone else with diabetes, but I’ve wondered what that would be like.

Kelley has strong opinions about this.  “I told myself I would never date or marry another type 1 as our marriage began to dissolve. And I have stuck to this. My new partner follows my Dexcom, makes sure I have plenty of insulin in the fridge and fruit snacks and grape glucose tabs in the night stand. I never realized how much I loved being taken care of. I have experienced both ends of the spectrum.”

But it can go either way, as with anything.  By contrast, my friends Chris and Dayle both have type 1, they are married, and they actually met through the diabetes community.  Diabetes is woven around different parts of their relationship, as Chris recounted.

“So do we talk about the dresser devoted exclusively to diabetes supplies?” Chris shared on my Facebook thread.  “The conversations about insurance? The cupcakes? The races to see who finishes their TSA patdowns first? The fact that juice boxes made it into our vows? I think we kinda stacked the deck with both of us having diabetes”

Dayle has a similar outlook, through a lens of humor.  “When Chris and I first met, I was actually dating a different pwd. But he was weird in that he actually changed his lancet for every. Single. BG test. So Christopher was a welcome change.”

Reading through people’s responses really opened my eyes to what it might be like to have diabetes on the other side of my marriage, and made me grateful for the people who live with and love someone with diabetes.  I know that when I’m frustrated with my own diabetes, it’s the steady and calming influence of my husband who keeps me from throwing my meter across the room and watching it shatter into a thousand pieces.

Which is a useful skill, since cats and kids alike might try to eat the little broken meter pieces.

Thank you to everyone who decided to share their thoughts on diabetes and marriage. Your perspectives are valued, appreciated, and comforting.

 

In Sickness and in Health: I Have Diabetes.

A week or two ago, I received a message from a reader asking about the influence diabetes has on my marriage.  I took to Facebook to get some broader feedback, but the question forced me to drop into the weeds to see how my diabetes touches my marriage.  This will be part one of a two part post, with today’s focus on the people in a relationship who have diabetes.

How does diabetes affect marriage?

That’s a big question.

Like many things in a marriage, diabetes is a big deal some days, not on others.  Ebb and flow and all that crap.  But the main takeaway is that once Chris and I were married, diabetes became “his,” too.  That is a strange paradigm shift because diabetes was mine for many years.

Diabetes put a noted strain on my pregnancies, and this became a family issue.  The location and number of my medical specialists and the frequent visits to them became a priority like no other.  Worries about my growing children were directly tied to my diabetes management, and this was a concern that Chris and I both shared.  That, and I rode my blood sugars low a lot of the time during my pregnancies, which caused extra worry for Chris (like the time he came home when I was pregnant with Birdy, sitting on a stool and eating a fistful of glucose tabs, announcing through a mouthful that I was 29 mg/dL).

And what I do for work orbits pretty tightly around diabetes, as well.  Most of my writing gigs are diabetes-related, as are the majority of my speaking engagements.  This makes diabetes come up in oddly detached ways during conversations with my husband, as though I work at a bank – a bankreas – when in fact my job and my disease are tightly intertwined.

Holly saw my request on Facebook for diabetes and marriage feedback and offered her take.  “It took me awhile to realize that my diabetes was no longer my own anymore. At first, I didn’t want my husband to help or know much about it because I thought of it as just my disease. But it’s not. It’s just as much his. He play a less significant role as far as managing it, but we are here to take care of each other and that involves him taking of my diabetes. He brings me juice in the middle of the night, lets me sit and zone out during a low while he’s taking care of the girls, and is always understanding when diabetes affects my mood (I refuse to admit it but he gracefully doesn’t mention it).”

Paige is not married, but in a long-term committed relationship, and had this to say: “Diabetes is the trouble maker in my partnership. He chose me, Henry Jekyll, but couldn’t know up front that he’d also get out-of-range Edward Hyde. Because of diabetes, I am a living dichotomy: Both the person he loves AND a person he doesn’t recognize. On the other hand, it gives us a common passion and common problem to solve. So, it’s trouble. But trouble has it’s role in every relationship.”

Some couples keep diabetes at arm’s length.  In my house, diabetes is not a big topic of discussion.  It rolls around on the peripheral.  Yes, it absolutely comes up at times when I have to remind Chris that I run out of energy at times, or when I vent about feeling burnt out and overwhelmed, or when we talk about medical insurance coverage.  But I am definitely not the type to hand over my management for a day, and my husband does not my site changes or ask what my blood sugar is.  I am not comfortable giving that much control to someone else, preferring to keep diabetes details to myself unless they need to be shared.  (I share CGM data but he’s only notified for lows.  We talked about it.)

“Aged 25 and married 10 months later, [diabetes has] not affected marriage in any way at all,” shared Chris, online known as Grumpy Pumper. “My wife plays zero role in my management. She knew me well enough to know I do everything on my own and I’d never let it impact her or the kids when we had them. I’m away all week, every week now for almost a year with work and I don’t share CGM data with her. I don’t feel the need to. Basically I’m a bit of a cave man, I guess.”

The hands-off theme rang true for Scott, as well.  Scott said, “I appreciate that my wife is pretty hands-off when it comes to diabetes in our marriage. I pretty much take care of all of the predictable/scheduled stuff (doctor appointments, prescriptions, bills) — I even do the majority of the cooking (though D is not the reason for that). Even for unexpected stuff (lows), I’m mostly self sufficient – treating it myself, but she’ll be patient if I need time before heading out the door to do something. She will check in to be sure I’m OK and will offer help when needed. Rarely do I ask for assistance.  But overall, she doesn’t involve herself in it on a daily (or even weekly) basis — and I prefer it that way. But I know she’s there for me when I do need her.”

Living with a chronic illness can add a lot of perspective to a relationship, and plenty of the feedback I received was about how diabetes changes certain parts of a marriage for the better, and for the stressful.

Karen is married to someone who does not have diabetes, but whose father did have type 1.  “I believe diabetes adds depth and dimension to a marriage. I had T1D for 21 years and was married for 10 years before diagnosis… and I had my two kids before it came along. The strange part is that my husbands father had T1D, so my diagnosis brought with it panic and fear as my husband remembered all the emergencies and challenges of living with T1D in the 50’s and 60’s. We actually did some marriage counseling around this that helped tremendously.”

Sarah has diabetes and her husband does not, but says that diabetes has brought focus on some nice, little things. “It’s made me appreciate my husband as my life partner. It’s the little things … whether always keeping a 20oz regular coke in the fridge for lows, or buying Diet Coke in a can (the go to drink when my blood sugar is high)… or helping our son with whatever needs to be done while I watch from the sidelines as I treat a low. He also runs rough shot on the little man when my blood sugar is high and I can’t stand to be touched.”

Kay has type 1 diabetes and likes to do the worm (stay with me – it’s relevant). “I try to live my life with diabetes in the background and I would say that it’s the same in our marriage. For example, at work everyone knows I have diabetes, but they also know that there are a million other things about me. Like I’m training for a marathon later this month, I like to do the worm when I’ve had a little too much to drink, and I have less than a year left of NP school. Again, they’re able to help if I need anything, but it’s never the focus. I would definitely say it’s the same in our marriage. I think the answers you get to this will vary a lot based on personality and how public people are with their diabetes and sharing parts of their life in general. I look at diabetes as part of my life and just try deal with it without getting too worked up over anything, 99% of the time, while others share high or low blood sugars, Dexcom pictures, and various other diabetes posts.”

And I’ll chime back in as an over-sharer (hi, diabetes blog) online but more private about diabetes in the general course of my life.  I think the diabetes community is where I process the majority of my diabetes emotions, with the most personal discussions still happening at home.

But sometimes discussions don’t happen, and I think it’s because diabetes can be scary to acknowledge in full.  A reader sent in an anonymous perspective about how her husband responds to diabetes, and it really resonated for me:  “He thinks I don’t see it, but in the panicked fleeting glances between eye blinks while I’m checking my blood sugar or drawing up insulin or just talking about a possible complication down the road, I can see his brain doing the math of how many years we have left together and how many he may have to spend alone.”

“Having a partner has shown me how much I have shouldered alone for so long,” shared Fatima, who had type 1.   “With any single instance of help, of which my husband provides plenty, I find myself taking a breath of relief that I’m not doing this alone anymore. It’s both extremely heavy on my heart in recognizing how devastating diabetes is, and equally uplifting to my spirit to know I have someone who cares and worries for me more than I think I worry for myself. My only worry ends up being that my husband might feel more helpless than I do when things get difficult – and that is hard to watch, but demonstrates love in a way that I don’t think living without a health condition could.”

I agree with Fatima on that one.  Despite the heaviness that diabetes can bring, it puts even the most trying moments into a very healthy perspective.  It’s not always easy to manage and I’m terrible at being consistently upbeat about life with this disease, but as far as its influence on my marriage, it is a drumbeat in the background, louder on some days, barely heard on others, but at least its rhythm is something you can still dance to.

Tune in tomorrow for perspectives on diabetes and marriage from people who married into diabetes.  And thank you to everyone who shared their thoughts.  <3

Guest Post: What FFL Was Like as a First Timer.

Wondering what it’s like to be surrounded by thousands of people affected by diabetes?  Today, my fellow Friends for Life faculty member and longtime family friend, Scott Johnson, takes over SUM to share his experience as a first-timer at FFL back in 2010.  

Scott was diagnosed with type 1 diabetes back in 1980 and has been blogging about his experiences since 2004 over at Scott’s Diabetes Blog.  Today, he’s an integral (and huggable) part of the diabetes online community, working tirelessly as an advocate and also as the US communications lead for mySugr.

(And if you’re looking to connect in person with like-pancreased people, you can register for Friends for Life here.  Or, if July in Orlando is not your thing, there’s another conference in Falls Church, VA that might hit the mark for you.)

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As soon as I arrived at the hotel, I started noticing people with diabetes stuff around the hotel. A Dexcom sensor or OmniPod pump on their arm. Maybe a diabetes-related t-shirt. A used test strip. I was gawking at everyone! Rubbernecking my way from place to place as I walked around the hotel. It’s so uncommon to see people like me out in the world, but at Friends for Life, it’s the norm, which is a very powerful experience.

And when it comes to powerful experiences, Friends for Life has plenty to offer. One of my favorite moments was walking into the big breakfast room for the first time. By dumb luck, I picked a corner door and walked inside. That moment stopped me in my tracks.

I was stunned by how massive the room was. I couldn’t see everyone because it was too big. The other side of the room felt lost to the curving horizon line of the earth. And it hit me, suddenly, that everyone there was there for me. Well, not me, exactly, but “me” as in type 1 diabetes. I’d never seen so many people together specifically for type 1 diabetes before I’m my life – and I’ll never forget feeling so amazed, so grateful, and so ready to drink it all in. It tugged on some heartstrings I hadn’t known were there. I’d found a family I didn’t know I was missing.

Friends at Friends for Life

photo credit: Jeff Hitchcock

The whole conference was extremely emotional for me. Seeing little ones with diabetes knowing they’ll grow up with a better experience than me thanks to Friends for Life made me so hopeful and happy for them. But knowing they’ll know the shitty sides of diabetes too made me want to hug them and cry.

Some sessions were presentation style with slides, others were small group sessions offering a safe place to vent about tough topics with others in similar situations. There were different tracks to choose from, depending on interest, relationship to diabetes, age group, and more. I bounced around from session to session and was impressed by all of them. Jeff, Laura and the FFL team pull together an impressive roster of faculty members and volunteers to make magic happen. It was the first time in my life where I could listen to a famous doctor or scientist that I’d only read about give a presentation one hour, then find myself visiting with them later that day somewhere else in the conference. It felt surreal in so many amazing ways.

And then there’s simply sitting with a group of PWDs for hours and commiserating about some situation that we’ve all dealt with or just laughing the night away and talking about everything but diabetes.

It’s hard to describe the level of understanding present at Friends for Life. I remember listening to Rick Philbin give a talk about insulin pumps and exercise, and as he’s up at the podium he described the subconscious urge to check his pockets for glucose tabs every time he programmed a correction bolus out of fear for going low down the line. I was like, “whoa… he can see inside my soul..” but I’d never been able to articulate that subtle fear! And then there’s the story of getting to play basketball with Rick and Gary Scheiner – an awesome experience – until they got into a “discussion” about the score. That’s a day I’ll never forget!

And stay tuned for another guest post all about eyes …

I have to acknowledge Roche Diabetes Care’s huge roll in my first Friends for Life experience. They invited me to the second Roche Social Media Summit and hosted the event at the same location as the Friends for Life conference. This reduced some of my out of pocket expense (airfare) which made it possible for me to attend. That small logistical favor changed my life in so many ways. I’m forever grateful.

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Thanks, Scott.  See you in a few weeks!

Diabetes Blog Week: Message Monday.

It’s Diabetes Blog Week, a week in the year where diabetes bloggers can rally together and share their stories, following suggested (but not mandated!) themes and focusing on connecting with one another as a community.  And who better to closely knit our community together than Karen (who is known in my household as “The Knitter“)?  Karen kindly brings us closer on Diabetes Blog Week by inspiring others to raise their voices.  So let’s do that.

Message Monday:  Lets kick off the week by talking about why we are here, in the diabetes blog space. What is the most important diabetes awareness message to you? Why is that message important for you, and what are you trying to accomplish by sharing it on your blog? (Thank you, Heather Gabel, for this topic suggestion.)

My blog started back in May of 2005, admittedly mostly because I was lonely with diabetes.  I had lots of friends and community outside of my busted pancreas, but no one in my life who “got it.”  That frustrated me.  Made me feel lonely.  Contributed to feelings of isolation.

So I Googled “diabetes” and a long list of shit that would go wrong with my body as I aged came back as a search return.  Not fun.  At the time, I was 25 years old.  I wasn’t ready to think about my chronic illness in terms of a ticking clock.  I wanted more reasons to live, and live well, instead of reasons why I should tuck my islets between my legs (ew) and get ready to die.

Eff that.  I want to have a proper life after diagnosis, not one that’s dominated by fear.  Gimme some hope.

Which brought me to the blogosphere over a decade ago, and that desire to connect with people who intimately understand diabetes is what drives me to stay here.

Over the course of the last eleven years, my “message” has changed.  I’ve changed, so that makes sense.  When I was in my mid-twenties, I wanted to find others who were interviewing for jobs, starting relationships, living on their own, and making their way as an adult … with diabetes.  Confirming that a community existed, and was accessible, lit me up proper.

As I got older, I was interested in hearing about successful parenting with diabetes.  Not exclusively about pregnancy, because that’s not a thing for everyone, but about how families expanded through whatever means they felt were right, either through biological children, or adopted, or fostered, or kids of the decidedly furrier variety.  I really took a lot of pride in sharing my pregnancy six years ago, and again now, because it wasn’t perfect, or seamless, or without issue but hell, it was mine.  And it what I worked for.  And it was worth it.

When there were complications, I felt comforted by the community who had been there before me, and by the hope they provided as to life after diagnosis.  Same goes for diabetes-related depression.  Same goes for infertility.

Same goes for any moment in the last eleven years where I’ve felt alone or potentially isolated, but the community taps me on the shoulder and goes, “Wait.  You aren’t alone.  Turn around; we’re all in this together.”

There’s a level of support found in our community that I can’t properly say thank you for.  But I’m thankful.

Why am I here?  To share my story, as ever-changing as it may be.  To make a difference.  The stuff I share from my digital soapbox grows as I grow, leaving my goal simply to connect with my peers and to live well.  What am I trying to accomplish?  I still don’t know, but I have seen that I accomplish more, live more when I feel the support of community.

I don’t have a set “message,” but I do have a life, and it’s worth documenting if only to prove to myself that diabetes will not bring me down.

If anything, with the help of our community, I’ll force it to raise me up.

Perspectives on Diabetes: Why Children with Diabetes Matters.

People ask me why this conference matters, why the organization matters, and it’s sometimes hard to sum up.  What’s so great about sitting in a room full of people with diabetes?  Isn’t it like surrounding yourself with a reminder of something that is a pain in the butt (diabetes)?  Doesn’t it suck to talk about diabetes all the time?

DUDE.  NO.  This is kind of the opposite.  Being around people who understand diabetes doesn’t breed a boatload of discussion about it.  Instead, I’m sitting at a lunch table with folks who know the ins and outs of diabetes, but we don’t shout out our blood sugar results or bolus amounts.  It’s not like that.  We’re talking about what our lives are like outside of diabetes, about the life we build that includes diabetes, not built around diabetes.

People with diabetes wear green bracelets, to both alert to potential emergency situations (you see a green bracelet in distress, think glucose tabs in a hurry) but the green also threads together the people who are playing host to diabetes.

A quick glance at someone’s wrist lets you know that they get it.

Sometimes, when days are kind of rough, I’ll put on a green bracelet to remind myself that I am not alone. Support from the community is as important as the insulin I take; both keep me healthy, and keep me going.

But it’s not just the green bracelets that make this community so powerful. Orange bracelets are given to folks who don’t have diabetes, but who remain touched by diabetes.  My daughter and my mother came to Friends for Life with me a few years ago, and they were also able to connect with their respective tribes, the orange braceleters. My mother, after decades of raising me without a vast diabetes support network, was immersed in a sea of parents who understood so much of what she’s experienced as my parent. And my daughter, her understanding of mom’s diabetes expanding with time, was able to hang out with other little kids who had parents with diabetes.

This kind of support, community … whatever you want to call it, it matters.  I mean, you’re here reading on a diabetes-centric blog, for crying out loud.  Clearly we, as a group, have a pull towards one another and benefit from connecting.  For me, knowing I’m not the only PWD (person with diabetes) on the planet makes diabetes easier to handle.  This is a hard thing to build studies around and quantify how it affects health outcomes, but taking my insulin is easier when my mental health receives care.  My A1C has been consistently steadier since engaging with the community.  My level of diabetes health literacy has grown by leaps and bounds.  And diabetes scares me less, on the whole, because I am surrounded by people who are in it with me.

Whole person health, remember?  Diabetes doesn’t exist in a damn vacuum.


The annual Friends for Life conference is coming up this July, and if you haven’t checked out the conference, now is the best time.  There are also other regional conferences (Anaheim in September, Falls Church this past April) that offer the same connection and community on a slightly smaller scale.

Full disclosure:  I’m a board member for T-1 Today, which is the parent non-profit organization for Children with Diabetes.  My bias includes that, and the fact that I haven’t produced any insulin for the last 30 years.  If you’re an organization interested in finding out more about how to make a tangible difference in the diabetes community, please connect with me.  And if you are interested in making a charitable donation to support the organization, click here.  And thank you!

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