Skip to content

Posts from the ‘Diabetes and Emotions’ Category

Guest Post: Mindy Bartleson on Chronic Illness, Mental Heath, and Removing the Rose Colored Glasses

Mindy is self-publishing an honest book about growing up with chronic illness and mental health. She wrote the content before rose colored glasses impacted her experiences too much.  Today, she’s sharing the why behind her efforts on SixUntilMe.

And if you’d like to help this book get published, you can visit the crowdfunding page to learn more, back her project, and help spread the word.  The Kickstarter ends a week from tomorrow.

  *    *   *

Usually, there are multiple things going on. It might be visible. It may be shared. It could be a secret- only shared with your inner circle. Even without a mental health diagnosis, mental health is an important thing to keep in mind with chronic illness, like diabetes. Hell- even without a chronic illness- mental health is important. Sadly though, it’s something that isn’t often talked about or taken seriously. It’s taboo. It’s not important. It’s hard to understand. You name it- we’ve heard it. Social norms also play a role. We’re supposed to be productive members of society and not acknowledge anything negative.

Over the years, I’ve adjusted my blog.. I wanted to talk about it all together- the type 1 diabetes, PCOS, endometriosis, anxiety, OCD, ADHD, (other diagnoses), loss, and more- because like the title of my blog says- “There’s More to the Story”. I wanted to talk about it honestly- the good and the bad. I didn’t used to do this. It wasn’t until diabetes burnout hit me with full force when I was in college. That’s when I realized something. Up until that point I wouldn’t acknowledge the negative parts of diabetes- of chronic illness. I thought I had to pick a viewpoint and couldn’t move. I had to either be positive or negative so I found myself not only lying to the world around me, but also to myself. That’s when I switched how I approached my blog and life.

About two years ago, I realized that I was applying rose-colored glasses to a lot of things in my life already at the age of 22. I was starting to say that all the bad things were worth it or completely ignoring them. I firmly believe that yes I can do it. That I (and others) can get through things. But I want to acknowledge that it can suck. That it’s hard. That maybe there are systematic things that play a part too. That I should still check my privilege. That’s what life is. It’s what I needed to do.

We need to talk about and share those moments- not just for ourselves but for other people who need that honesty to know that they are not alone. We need to share the moments where we sit crying on the bathroom floor because diabetes wouldn’t cooperate all day and someone made a hurtful comment. Then we can share how we got back up to change that pumpsite and maybe to tell that person who made the hurtful comment how we feel. The how is so important. The fact that we get back up is so important. But- maybe someone needs to hear how we felt when the tears hit – how we felt when you just had enough – how it felt to let it out. We need to do that.

About two years ago, I made the decision to start a project. I decided to write a book about chronic illness and mental health. Everything I’ve talked about so far is what I applied to writing this book.

I’m aiming to balance the positive and the negative together on growing up in general but also with chronic illness and mental health along for the ride. I talk about moments of why I sat on the bathroom floor crying and how I got up. Of course I talk about more- and it wasn’t always a bathroom floor.

Over the past two years, writing this book has pushed me to process a lot of my past. All of it. I’ve seen how far I’ve come and realized the importance of so many situations.

I’m pursuing self-publishing. Because I recently graduated college (and put myself through it so I have loans) and have a social work degree, I’m utilizing crowdfunding to make this happen.

  *   *   *

I’ve put my money where my blog post mouth is and backed Mindy’s campaign, as I think this resource would be a powerful one for our community as a whole.  Mental health is health and I agree it needs to be talked about, shared, and cared for as openly as diabetes.  

For more from Mindy, you can follow her on Instagram, Twitter, Facebook, and her blog “There’s More to the Story.”  

 

Thirty One Years with Diabetes.

When my diabetes marked it’s 25th birthday, I wrote a bulleted of stuff I’ve learned since diagnosis.  Another handful of years later, most of that list still holds up, with a few tweaks:

Sometimes I can’t believe this is still A Thing.  That diabetes is still a thing that requires attention, work, and patience.  I used to believe in the “five more years until a cure” thing, but that promise has been folded and refolded six times over by now.  I believe that the research maybe prevent diabetes in my children, but I’m not sure it will cure it for me.  And that weirds me out.  “Forever” was always tempered by that, “Yeah, but five more years …”

And there’s a strange sense of acceptance that’s come in the last seven years, accepting that diabetes might not really be cured for me.  I find myself looking at research and technology that’s rocketing towards alleviating the burden of diabetes on people living with it and feeling awesome about that progress.  And it’s not just the Big Companies who are making a difference.  It’s the renegade ones.  And the community groups.  And the PWD empowered and inspired to make a difference.

I’m regularly impressed by families who live with diabetes.  They know how to take These Things seriously without taking those Things too seriously.  They speak in a special language of numbers and ratios and tubing lengths and labwork percentages.  They are tireless, even when they’re tired.

They inspire the absolute hell out of me.

Life is still filled with a whole bunch of colors and I’m not done coloring yet … even if it’s occasionally outside the lines.  Despite diabetes.  And because of diabetes.

But duuuuuuude, I still pretty much despise this disease.  Yep.  I can’t pretend to be above that, to have embraced it and found happiness in it.  Nope.  I do not like diabetes.  Any grace that’s borne of it doesn’t change the chokehold it’s had on my life at times.  I wish that wasn’t true, but it is true.

However.  I have gained so much from this disease.

Not just perspective, although that’s a powerful grab.  Troubles whittle themselves down a little bit when put through the mental diabetes woodchipper.  That perspective has been to my benefit as I went through my teen years (other girls were angry and upset that their jeans were a size 8 instead of a size 2 –  I was fine with a size 8 so long as my morning BG was between 80 – 140 mg/dL) and also as I managed pregnancies (stretch marks?  morning sickness?  yeah, but that healthy baby, though).

I’ve also made friendships – ones as chronic and lifelong as diabetes – where these like-pancreased connections are part of my inner circle for life.  FOR LIFE.  This connection was forged through similar circumstances but will remain intact despite distance, time, and even a cure.

But the reality of diabetes sets in more and more, especially as the same realities of Regular Life hit their stride.  I can’t pretend that it’s all easy and effortless.  This shit might look easy, but some days it’s hard.

Diabetes scares me more now that I’m older.  I read about heart attacks and other crisis events and used to think, “Damn.  They were so young.”  And now I read, thinking, “Damn.  I’m in that age range where I’m old enough for it to happen and young enough for people to think, ‘Damn, they were so young.'”

This freaks me out.  I worry about the Big Things more these days than I did before.  I try not to, but I still do.  Sometimes bedtime is when my brain hits the spin cycle and I have trouble falling asleep, picturing What Ifs and Oh Shits.

Aging and diabetes is now a thing.  Are my knees making that weird cricking sound when I run up the stairs because I’m older?  Or because of diabetes?  Or is it a combo deal?  And when you answer, can you speak up because I’m seriously having trouble hearing you.

Even after 31 years, diabetes still has days where it behaves.  And days when it doesn’t.

I can say exactly the same for myself.

Since I wrote my list at 25 years of diabetes, I’ve had another little baby bird and my life now is tied to two young people, not just one.  I have two babies to stay healthy for, two babies to annoy well into their old age.  The motivating force towards good health that my children provide cannot be properly appreciated.  They are my little world.

My hope lives in a different house now.  As I mentioned, I’m not expecting diabetes to be cured, but I’m anticipating that I may be able to ignore it altogether in the future; that data and technology will come together in a way that doesn’t make me produce insulin but also doesn’t produce worry and anxiety in the same way.  Stick on the device and it will diabetes for you.  Yes, please.  Hurry, please.

Instead, I hope for my kids.  I hope for their kids.  I hope that my mom will know with certainty that diabetes will never make my life less mine.  I hope that my husband knows I’ll be around to drive him bananas for decades to come.  I hope the community rallies and sticks together with one another, rising up against our common enemy while educating, supporting, and loving one another.  Enormous thanks to all of you for being part of a network of hearts and hopes that make this walk with diabetes easier, and less lonely.

After 31 years, I look at this body, all riddled with shouldn’ts and can’ts, and see that it should, and it can.

And it will.

 

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

Looking Back: Language and Diabetes.

In combing through some older posts, I found this one about language, and the words we use.  (Older post here)  How I talk about my diabetes influences how I feel about it, or how it can make me fee.  Which is why I wanted to revisit this post this afternoon, looking back to last year’s Diabetes Blog Week.

  *   *   *

Language matters.  The words we use matter.

Some words make me all fired up, like “consumer.”  I am a consumer when it comes to cars, or coats, or snow blowers.  When it comes to diabetes, I’m not a consumer.  I would never choose to consume these goods; they are chosen out of the desire to stay alive.  I don’t like “suffering from diabetes” because it makes me feel weak and compromised, which stands in contrast to where I prefer to anchor my emotions about diabetes.  And I totally hate the concept of “good” and “bad” blood sugars.  That whole ideology can fuck off in favor of “in range” and “out of range.”

I appreciate the word “complications” because its connotation is perfect for how I feel about diabetes-related complications; that shit is complicated.  I like the word “empowered” because it reminds me that I have a say in how this whole life maps out, diabetes or not.  I like any words and phrases that tie the physical aspects of diabetes to the emotional ones.  I latch on actively to “hope” versus fear.  And I like being called “Kerri” instead of “diabetic,” but hey, that’s just me.

(And I really like certain curse words, but I am trying to use those less, but it’s difficult.  I don’t make insulin, I do make use of curse words.  It’s a terrible habit, but one I am not changing.)

But it’s not about the words we shouldn’t use, or the ones that seem potentially loaded.  This morning, after hearing about the death of a fellow advocate (outside of the diabetes space), I’m spinning with thoughts of the words I wish I used more, the things I wish I said.  The things I should say.

Like “thanks for sharing this.”  I think this every time I read a blog post, or a Tweet, or a Facebook update from someone and it makes me stop and think.  The DOC is filled with voices that challenge what I thought I knew, and who teach me how to re-examine my chronic illness with grace and determination or perspective or humility … or all of it.  I like the way they think.  I like what they say.

And “How are you feeling today?”  I interact with a lot of people touched by illness – patients, consumers, caregivers … whatever word words for you in this way – and their stories touch me.  A lot of the time, I absorb what they’re saying and store it away in my head, but I want to reach out more, ask “how are you feeling today?”  I want the people in our community, and outside of it, to know how much I appreciate what it takes to share their stories, even when they are worn out by doing it, by living it.  A little ask goes a long way.

Or “You aren’t alone; how can I help?”  Because sometimes people share to get things off their chest (“I hate low blood sugars!”), but other times they reach out in hopes of someone reaching back (“I feel so alone with diabetes.”)  Words matter, and hearing, “You aren’t alone; how can I help?” might make a difference.

And “I’m sorry.”  Because I am.

But mostly “thank you” and sometimes, “I love you.”  Over the last few years, there have been people who have come and gone from my life that left lasting impressions, and I bet I didn’t tell them “thank you” and “I love you” nearly as much as I should have.  I know I thought it – thought it a lot after they were gone – but I should have said it then.  When they were here.  When they could hear me and understand the influence they’ve had on my life, the positive mark they’ve left on my existence, and the ways they’ve rocked my world for the better.

Words matter.  Stories matter.  People matter.  So thank you.  And even though you’re reading these words on a glowing screen and we’re communicating mostly through a digital medium, you are part of a community that has forever changed me.

Follow

Get every new post delivered to your Inbox

Join other followers