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Posts from the ‘Psychosocial Support’ 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

Voices Carry.

There’s no generation assigned glibly to me – not a millenial, not a Gen X’er, but I seem to be an “xenial,” according to this new write-up.  I identify completely with “experienced an analogue childhood and a digital adulthood.”

My journaling has gone from paper journals to blog posts, too.  I used to keep volumes of chaotic ramblings as a kid, before switching over to blogging.  I’ve written over 2,760 entries on Six Until Me, chronicling my diabetes since May of 2005.  And recently, I’ve wondered what keeps this pen to paper (or, more accurately, these hands to keyboard).  What’s the point in sharing my story?

Even my diabetes has made a transition from analogue to digital.  When I first came home from the hospital after my type 1 diagnosis, my mom used a urinalysis kit for a month before gaining access to a glucose meter.  (Note:  Glucose meters were available, but we didn’t have one for four weeks)  My glucose meter was an Accu-Chek Brick (not the real name but could very well have been) and my lancing device was this wretched thing.

Glucose results were not stored in my meter but instead were logged by hand.  I didn’t count carbs; I followed the ADA’s exchange system.  Two starches, a protein, a fat, a fruit … and a headache with each meal.  My insulins were NPH and Regular and yes, the bottles had little cows and piggies on the side.

Thirty years later, the touchscreen insulin pump on my hip delivers fast-acting insulin without uncapping a syringe.  A continuous glucose monitor offers up glucose results every five minutes.  My meters download and upload to the cloud consistently and even my prescriptions can be refilled using an automated service.  My diabetes has gone entirely digital.

… except.

That it remains diabetes.  All of the technology is truly amazing and life-changing, but this body still doesn’t make any insulin.  Still experiences blood sugars above 200 mg/dL and under 60 mg/dL.  Exercise is still an exercise in planning and perseverance.  Still doesn’t process food physically the way that people without diabetes do.  Mentally doesn’t process food the normal way, either.  Or the concept of longevity.

Diabetes is a raging back burner that is on all the time, despite going digital, because it is still NOT CURED.

And that’s what keeps me sharing my story, and sharing stories from other PWD:  it’s still not over.  We’re surviving and thriving and kicking a tremendous amount of ass but we’re still doing this with diabetes dragged behind us, a weight that is light as a feather some days and heavy as an A380 on others.

Our voices carry.  Sharing your personal diabetes experience helps it reach the ears and eyes of someone who needs that affirmation that they aren’t alone.  Stories change over time, too; and diabetes has been a part of all of those experiences.  When I first started writing, it was about college and dating and finding a job.  Then it became planning a wedding and cultivating a career.  Now, twelve years later, it’s a lot about traveling, expanding my writing, and raising my children.  My life has changed, is changing, and sharing these experiences shows one small version of what life with diabetes might look like.

That yeah, it’s diabetes and it’s not over.  But my life is also not over.

So cheers to you, all of you who are sharing all the triumph and chaos that comes with chronic illness.  Our collective cadre of storytellers – the ones who write about incredible feats of strength and conditioning their bodies.  The ones who write about creating life.  The ones who share the mental health perspectives.  The ones who influence policy.  The ones who talk offer a moment of “me, too.”

The ones who change minds.

The ones who change hearts.

We keep going because we don’t have a choice to leave diabetes behind.  But we do have a choice to bring hope forward.

Recipe for FFL.

Want to make Friends for Life?  Here’s how:

Ingredients:

1 large Coronado Spring
Millions of humidity molecules
3,000 family members who live with diabetes
1,000 (estimated) Mickey Mouse waffles
22 bowls of glucose tabs
Dozens of supportive siblings
Hundreds of orange bracelets
Hundreds of green bracelets
Several buffet tables of carb-counted food
Add sports central, support sessions, and learning workshops to your taste

Directions:

Take your humidity molecules and mix with the Coronado Spring.  They will combine to become as hot as possible.  Move into your hotel room and be thankful for the conditioned air.

Assess your pancreas. Salute your pancreas if it functions properly and don your orange bracelet with pride. If your pancreas is a thumbs down as far as insulin production goes, put on your green bracelet with pride as you are not alone with diabetes.

Attend focus groups and meet with companies who aim to make a difference in the lives of people with diabetes.  Between meetings, visit the pool and go down the waterslide, mingle with CWD staff and friends at Pepper Market, and give a happy wave to strangers-who-are-not-strangers.

Have fun.  Enjoy healthy meal options that are carb counted (and gluten-free if that’s your jam).  Dance with the DJ at the banquet.  Meet the Disney characters at breakfast.  Get a retinal screening.  Learn about things like diabetes and exercise, and going to college with type 1 diabetes, and new technology options, and parenting and pregnancy.  Collect at the social spots in the evenings and talk about LIFE and some diabetes but not entirely diabetes.

Be thankful that companies and sponsors and donors have come together to make an event like Friends for Life possible.  Thank them for their financial contributions and support.  Thank the fellows.  Thank the scholarship programs.  Thank the staff for their tireless efforts.  Thank your friends and families for being part of this experience with you.

Rinse and repeat for several days, until your heart is full and your voice is gone and the corners of your mouth feel stretched to the brink from smiling.

Disclosure:  I could not be prouder to be a member of this organization as a board member, part of the adults with type 1 diabetes faculty, and a grateful PWD attendee.  My travel and lodging are covered by the organization, but my opinions and dedication to the cause are my own.  Huge thanks to the staff, supporters, and sponsors who make Friends for Life possible.  

If you’d like to make a donation to support CWD, please click here.

 

ONE Great Weekend.

Diabetes for 30+ years means you’ve earned a “legend” sticker.

“So what made you want to do the TCOYD ONE conference?” I asked the TCOYD team.

“We were sitting around one day having drinks and just said there is so much stuff coming out in the field of type 1 diabetes that we NEED to put on an event with the absolute best of the best speakers and invite every person with type 1 diabetes around the world who we can get the invite in front of,” said Dr. Steve Edelman, Professor of Medicine at the University of California San Diego and Veterans Affairs Medical Center.  He’s also the founder of Taking Control of Your Diabetes (TCOYD).  “Oh my god, the conference was an incredible weekend of palpable excitement in terms of learning the most up-to-date real information about managing diabetes but also the emotional outpouring was not anticipated or expected. Something I have never experienced in my personal or professional life.”

This is saying a lot, since Steve has been living with type 1 diabetes for almost 50 years.

Tricia Santos Cavaiola, MD and co-director of the TCOYD Type 1 Track, highlighted the differences between ONE and the other TCOYD conferences.  “The biggest difference with this conference was putting more emphasis on living life well with type 1 which is why we tried to make it a retreat in addition to the typical education component. Looking back on this weekend, my favorite part was just seeing how happy everyone was, from walking around the health fair, to huge turnouts at the group activity/exercise sessions, to laughing at the talks, to watching EVERY SINGLE PERSON walking around with a smile on their face. TCOYD conferences always leave me with a ‘feel-good’ feeling at the end, but this one topped them all.

Jeremy Pettus, MD (co-director of the TCOYD Type 1 Track), echoed Steve and Tricia, adding, “I think I’m just proud to have been a part in making it all happen!”

The TCOYD ONE conference that took place last weekend in San Diego, CA was nothing short of amazing.  PWD hanging out, learning from one another, and sharing their diabetes lives without hesitation or judgment is the kind of connection that benefits people’s emotional health as well as their blood sugar numbers.

Nothing leans into “good health” quite like “good friends.”

Ann Ryan Donahue, 46 years into her life with type 1 diabetes, said, “It was clear that this was a dynamic group of T1’s who have all learned to make something positive out of something negative … a room full of progressive, motivated, positive individuals with T1 … and what a great forum to share all the ‘tricks of the trade.’ This may rate as the ‘hungriest group begging for information’ that I’ve ever been a part of.”

I’ll second that completely.  In addition to giving a talk about my 30 plus years with type 1 diabetes, I lead two discussions about the mental/emotional health surrounding the issue of diabetes-related complications.  The stories that were shared in that room can’t be summed up in a blog post or a paragraph.  People were honest, and raw, about what they were dealing with or what they were fearing, and the connections in that room were instant and intense.  I could not be prouder of our community for coming together and talking about where their hopes and fears are rooted.  This is what it’s about for me; connecting with others in efforts to live big, and live well, diabetes be damned.

“It felt so great to be with so many people who understand and know how challenging life is with this condition,” said Julie Forsgren, living with type 1 for over 40 years.  And this was a theme among the attendees, the peer-to-peer connection between PWD.  “I loved how even the doctors and expert speakers were also type 1. It felt SO good to be among others who really get it! The food was a delicious bonus, too. It was so exciting to hear about the developments in improved technology from the CEO’s of the companies working on them. It was an inspiring and informative weekend full of impressive speakers. Such a great feeling of comfort and understanding being among my peers!

“When I looked up in yoga and realized that everyone in that space, at that moment was present with peaceful intentions AND diabetes, it absolutely took my breath away,” said Cynthia Celt, T1D for 20 years, about being part of the yoga group in the morning.  “It was one of the most awestruck diabetes moments I’ve ever experienced. There was no worry of a CGM alarming or the disapproving glances that sometimes accompany a yogi toting her phone into class. It was the first time I have ever felt 100% part of ‘the group’ rather than an outlier.”

Rachel Mercurio hadn’t ever met a person with type 1 diabetes “in the wild” before. “Words cannot adequately describe how incredible this weekend was for me. Before this conference, I didn’t know a soul who had T1 ‘in real life.’ Of course I knew other T1s were out there, but I have always felt like I was alone on an island. Hearing the CGM and pump beeps throughout the weekend was so comforting to hear. Warm, lovely people came up to me and introduced themselves to me. For the first time in my life, I was talking about diabetes without educating anyone about this disease, because you all get it. The presenters are true advocates. I knew this was going to be a great weekend, but I didn’t quite expect an impact of this magnitude.”  (And for the record, I had the honor of meeting Rachel and she’s a force.  And her neon yellow hair is awesome.)

It was called ONE but not because you’re the only one.  You’re ONE of many, and you are not alONE.

Thanks to the TCOYD for hosting this event, to Tandem Diabetes Care for sponsoring my keynote and breakout sessions, and to every person living with diabetes who came to find support, camaraderie, and the other ONEs like them.  See you at the next ONE!!

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