Skip to content

Posts from the ‘Psychosocial Support’ Category

To A Crisp.

The folks at Diabetes Daily have cobbled together a day to discuss diabetes social media burnout.  (Yes, ironic to dedicate a day of online discussion about diabetes social media burnout …) but the topic is real and something that we have all encountered over the years, so it bears discussion.

Only I’m not talking about it today.

Why?  Because I don’t really feel up to it.

The crap that I have to do to stay on top of diabetes is non-negotiable.  Checking blood sugars, making careful food choices, exercising, blah, blah, blaaaaah.  That stuff is part of the repertoire I cannot ignore without putting my health at significant risk.

But the blogging partTwitterInstagram?  Answering emails?  That’s not required for diabetes management.  That’s auxiliary.  And mostly positive, in my experiences.  The Internet isn’t always the cuddliest place, but in the diabetes community there is a welcomed trend of positive interactions and real, substantial relationships with people touched by diabetes coming together to share experiences, ideas, and to help someone carry the parts of diabetes that get a little heavy at times.

But these connections are not required.  They are a choice you can make, just like opening your computer or clicking away on your smartphone.  More choices follow from there, steeped in personal preferences:  Download the Facebook app on your phone?  Only use Twitter during #dsma?  Take weekends off from social media?  Engage with trolls?  Engage in supportive interactions and fruitful friendships?  Give a shit about cruel things that people might say?  Ignore/block/delete unwanted commentary?  Seek out local, in-person meet-ups?  Have long text message threads with friends you’ve made in the DOC?  Dedicate your personal and professional life to diabetes efforts?

… or how about take a breath?  Enjoy a combination of what’s available.  Relax a little bit.  Enjoy social media as an option, not as a requirement.  The Diabetes Online Community is a tool in our diabetes management toolbox.  And just like with any toolbox, you don’t always need the same one.  (Avoid trying to use a flat head when you need a Phillips.  Don’t use a hammer when you need a steamroller.  Learn the difference between a level and a wrench.  Never substitute playdough for a nail.  Don’t chew on a socketwrench.  Et cetera.)

For more on diabetes burnout with a side of social media, check out these posts:

Slightly Charred

Show Me Your Pump … Or Not

Slackadaisical

Talking About Diabetes Burnout

Happy Birthday, Dr. Seuss!

 

 

Looking Back: Taking the Plunge.

Summer is coming to a close over here and as we prepare to send Birdzone to kindergarten, I am spending the last few days of summer with my child velcro’d to me.  In an appreciation for family and for how mine handled diabetes as I was growing up, I wanted to look back at a post from five years ago where my aunt takes a stab (ha?) at giving me my insulin injection.   My immediate and extended family both took excellent care of me as a kid, and I’m glad that diabetes didn’t prevent sleepovers.

*   *   *

I’m from a very big family – my mother is one of seven and my dad is one of five, for starters – so I had plenty of relatives who used to babysit for me when I was small.  Overnight visits at my aunts’ houses were part of the fun, and I always looked forward to them.  (Because – let’s be honest – I liked that they let me put makeup on them and do their hair.  My pretty aunts were like living Barbie Doll heads to me.)

Things changed a bit when diabetes came into the picture.  Sleepovers weren’t as easy to manage, because now we had to juggle insulin injections, blood sugar tests, and being on the lookout for high and low blood sugars – especially back in that first year when everything diabetes-related was so new to all of us. I was still a little kid, and now all this medical stuff, too?

When I was first diagnosed, I didn’t do my own insulin injections.  At the outset, my parents did my injections for me, but after a few months, my extended family started to learn.  I think about it now, having baby-sat for my nieces and nephews and little cousins, and I can’t even picture that learning curve.  I’m so grateful that my family came together to learn to deal with diabetes, instead of leaving my mom and dad as the only ones who were “in the know.”

One of my earliest memories with diabetes is of me waiting on my aunt’s couch while my mother tried to explain to my aunt how to administer my insulin injection.  And every time I recall it, it makes me laugh.

“You need to uncap the syringe, check for any air bubbles one last time, and then pinch up where you’re going to stick the needle.  Once the needle is in, you press down the plunger and pull the needle out.  No problem!”

My aunt was nervous.  “I pinch the skin and then put the needle in?  How fast do I put the needle in?”

“Pretty quickly,” my mom responded.  “Don’t think about it.  Just jab it in there, as gently as you can.”

“Okay, so pinch, jab, plunge, remove.  Got it.”

“Great, so are you ready to give it a try?”

(Mind you, the entire time they’re debating this, I’m face-down on the couch with my pants pulled down, waiting for the insulin injection to be given into my seven year old butt cheek.  Another truly classy moment for me.)

My aunt came towards me, brandishing the syringe like a hot poker.  She uncapped it nervously, pinched up the top of my hip, and said (and I remember this clearly), “Ready, Kerri?”

“Yessh I amph.”  I said into the couch cushion.

“Okay, here we go!”

She expertly stuck the syringe needle into my skin, and I barely felt the pinch.  And then she pulled the needle quickly out, letting out an “Oooh!  I did it!”

My mother sighed.

“You didn’t push the plunger down.”

“What?”

“The plunger.  To dispense the insulin?  You didn’t push it down.  You just stuck her with a needle and then pulled it out again.”  I could hear my mother trying not to laugh.

“Oh shit!” my aunt exclaimed.

I laughed, despite the fact that they were about to advance on me again with that syringe.

“You shed de esh word.”

Guest Post: Let’s Talk About It.

Diagnosed with type 1 at age 15, Kimberly Hislop has been living with diabetes for 18 years. She’s been an insulin pumper since 2009.  Kim is currently studying psychology with hopes of one day working with people who have been diagnosed with chronic illnesses. She’s been a guest speaker for pharmacists, nurse practitioners, and physician assistants, teaching about diabetic complications from a patient’s perspective.  Her writing can be found at Deniabetic, and today she’s rounding out my week of guest blogs with a really important topic:  diabetes complications and learning to live well despite their diagnosis.

*   *   *

Being diagnosed with diabetes is scary. We quickly learn that we can overcome our fear of needles as we do what is necessary to survive. In my opinion, the hardest fear to conquer is the fear of the unknown. As a person living with diabetes we hear the terrifying word “complication” and our thoughts run down the black hole of “what ifs.” This black hole can be depressing and paralyzing for some. I truly believe that the diabetic community needs to start talking about complications. Most of us can name them but that is where it ends. If we could understand what the complications were and how to treat them it could possibly lower the fear factor.

Seems simple enough, right? So why don’t we talk about it?

To me, people with diabetes are truly afraid of three complications:  retinopathy, amputation, and kidney disease. I have had to deal with all three of these. I think it is so important to talk about these for a few reasons. When you can find someone who has SURVIVED these complications it gives you hope. You can see that there is life after complications. Also there is treatment out there. When you diagnosis complications early, there is a possibility of reversing it or at least stopping the progression. It is not necessarily a “done deal.” We need to talk about these things so that we can learn to be an advocate for ourselves. If it is a new diagnosis, you may not know what treatment is out there or even feel that you can ask for a second opinion.

My first complication was neuropathy. It came on five years after my diabetes diagnosis, when I was 20 years old. I did not know anyone who had this complication. It was incredibly painful and debilitating. I spent six months in a wheelchair and had horrible side effects from the medication. I felt shame, guilt, and really misunderstood. Mostly, I felt alone. I followed what the doctors told me to to but like with most complications, they can’t tell you for certain that you are going to be alright. I became suicidal because I couldn’t handle living with the pain. I spent a few days in a treatment program and from there started talk therapy on a regular basis.

For me, when I am diagnosed with a complication my first reaction is to figure out what I need to do to treat it, if it is an option. I think it is overwhelming to deal with my emotions while dealing with going to doctors and figuring out treatment.  And after a complication diagnosis, I always wonder why. Why me? Why did this happen? What caused it? The problem with diabetes is that it is a self-managed disease. Sometimes the only answer I can come up with for the question “Why?” is “because of me.” I think of all the things I did wrong such as,

I didn’t test enough.
I didn’t count my carbs right.
I didn’t cover with enough insulin.
I skipped my shot.
I didn’t exercise enough.

The hardest complication to face was my chronic kidney disease. I did not want to talk to anyone about it. It took me a year before I made it public and really I was forced to when I realized that I needed to find a live donor for a kidney transplant. I did not want pity from anyone. I did not want anyone to ask me if I was ok because in truth, I was not. I did not have the energy to fake it for the sake of others. I also felt like it was my fault. If only I had taken care of myself during my college years, instead of living with an A1C of 19% for two years. I felt like maybe I didn’t deserve a new kidney.

I was also incredibly freaked out about having someone else’s organ inside of me. I was sure that I would feel different. I wouldn’t be myself anymore. I even had pictures taken professionally about a month before my transplant as a reminder of who I once was. My guilt and shame kept me from reaching out to others who were transplant recipients. When I would go to the doctor’s office it would be filled with people 20+ years older than me.

I felt alone.

I know I am not the only one. The problem is that we feel such guilt and shame that we don’t talk about it. I don’t want to talk about my kidney transplant because I know that people will assume that I didn’t take care of myself. I don’t want to share about my retinopathy because clearly I caused that myself. If you have ever felt this way, raise your hand. The truth of the matter is … diabetes is not your fault. There are some people who take the best care of themselves and they do not suffer from any complications, some take the best care and do. There are those that ignore their diabetes completely and yet are never diagnosed with a complication. Sometimes there is just no explanation for any of this.

It is so important for our community to talk about complications and the fears associated with them. Instead of feeling shame and guilt, we need to stand together. When you are diagnosed with a complication it is imperative that you connect with someone who has gone through it. It can take away some of the unknown fear.  Every time I have been diagnosed with a complication I have felt “this is the worst thing that has ever happened to me.” In the moment, that is what it feels like. But somehow, you survive. It takes hard work both mentally and physically.

We need to discuss the importance of mental healthcare in all of this. It is only natural to feel depressed when diagnosed with a complication. The fact is, you can’t take the best care of yourself if you are not feeling good about yourself.  We need to figure out how to take the stigma of “it’s my fault” if you are diagnosed with a complication.

Complications suck but there is a life after being diagnosed with a complication. So … raise your hand if you want to talk about it. Let’s get this conversation started.

*    *   *

:: raises hand ::  I have written before about my own experiences with diabetes-related complications, and I know that sharing that information was simultaneously terrifying but also empowering.  By talking about the thing I needed the most information about and the most support with out in the open, I was motivated to move past fear and step towards positive actions to improve my health.  If you are dealing with complications, or simply scared by the thought, please raise your voice.  You are not alone.  And with early detection, early intervention, and good mental health support, we can find a very good life regardless of the road we’re on.  Thanks for sharing your story, Kim.  It’s an important one to share.

 

Slightly Charred.

Diabetes burnout and social media burnout have a tendency to go hand-in-hand for me because it becomes tiresome to document my failures.

“No, the failures of your pancreas,” said a friend.

Nope.  The failures of me, pancreas and all.  I can’t separate the two.  Diabetes challenges me emotionally and physically because I am lucky enough to deal with a disease that offers me a fair amount of control … which translates into a predictable to do list.  As much as I try to reduce my level of responsibility when it comes to this crap, I have to own my role in this disease.  It’s not something I could have prevented, but it is something I have to deal with.  I look at other health issues in my life and realize how little influence I have over them.  And then I look at diabetes and I’m forced to acknowledge that this disease is a confluence of intention and reaction.

Writing about diabetes has become hard some days.  It used to feel good to write about a low blood sugar and get that story out there because it felt like a purging of bad feelings, and the flood of “me, too!” moments made the edges of frustration softer.  Now there are moments when sharing feels pointless; no one needs a reminder of why my disease can be a pain in the ass … least of all me.

I have good intentions.  I intend to take care of myself, and despite the variables that influence diabetes outcomes, I make efforts.  (I exercise.  I eat well.  I don’t smoke.  I am proactive with my medical appointments.  I check blood sugars and take insulin.  I list things that seem smug, like the aforementioned list.)  But diabetes is still diabetes, and I am still reacting to the disease a fair amount of the time.  Reacting to a low (eat something!) or reacting to a high (bolus!) or reacting to a skin irritation (Toughpad me) or reacting to frustrations related to the diagnosis of complications (eyeball fuckery) or reacting to the underlying theme of always hoping for the best and yet being pragmatically prepared for the worst.

Community helps me process this stuff.

Community is a good way for me to manage my emotional health as it relates to diabetes (directly).  Connecting with peers helps me find my footing in moments when I feel like diabetes is dominating.  But that sounds so formal, like secondary headline on a journal article.  The diabetes online community and all this blogging stuff has given me so much in terms of emotional health success.  So what am I doing, writing about social media burnout?  I actually feel stupid saying that there can be burnout from social media, even though I know there can be.  It just feels like the most first world issue there ever was.  Almost like having too many pairs of sturdy shoes – “I simply cannot manage all of the opportunities that are available to me!  Woe is my woe-crammed self.”

So am I burnt out?  Or just slightly charred?  And do I need someone’s permission to voice this issue?  (No.)

Sometimes I question my decision to (over)share so much of my diabetes process in a public setting.  Putting information out to the Internet invites strangers to comment and critique, which is productive when the discussions are empowering and awful when the discussions are cruel.  I’ve had a lot of positive experiences overall via the Internet but it’s been a mixed bag at times.  Which I’m not surprised about – not everyone will like everything, or support everything, or spell everything correctly – but at the same time, it surprises me when I see people rip others apart for their shortcomings or vulnerabilities.  Watching people run commentary that’s hurtful detracts from the nice, mellow community vibe that I appreciate most.  Basically, sometime people (myself included) are dicks, and I hate when that happens.  It makes it harder to share openly and to support.  As the years go by, I want to share less because I want to protect my right to fuck up.  It’s a weird halfway, because the moments where I fuck up are the ones I need the most support during.

So what’s the point of this post?  Here you go:  On September 1st, the team at Diabetes Daily wanted to generate some discussion about social media burnout.  And I hope people talk, because discussions like these make our community stronger.  Or at least that’s the goal.

It’s not about curating a perfect online existence; it’s about living a real, healthy life even with the raw and ragged edges.

Diabetes Dominator.

It’s nice to talk with other people who have diabetes.  It’s even better to laugh with other people who have diabetes, finding some levity in the diabetes moments that seem like they’re shuttling towards chaos.  And a few weeks ago, I had the chance to both talk and laugh (hard) with the Diabetes Dominator herself, Daniele Hargenrader.

We talked about a broad range of topics, from diabetes diagnosis to growing up, from intimacy and diabetes to my sloppy swipe at tips for people living with diabetes.  And it was fun.  She’s a force to be reckoned with, and I’m really happy she asked me to visit her video series.

For more from Daniele, you can check out her website.  Thanks for watching (and thanks to Daniele for not yelling at me for talking too fast).

Panel: Challenges in Healthcare Leadership.

Yesterday, I took part in a panel discussion at the Executive Master of Healthcare Leadership Class of 2017 Convocation at Brown University (say that three times fast … I sure as hell can’t) and part of our discussion was about leadership in the healthcare space.

My fellow panelists were folks who were employed in the healthcare arena (Michael Hudson, EVP of Blue Cross Blue Shield, Secretary of the Executive Office of Health and Human Services Elizabeth Roberts, President and CEO of Care New England Dennis Keefe, Director of Alnylam, Ironwood, Momenta Pharmaceuticals Marsha Fanucci … and me), and I thought about who I work with:  medical device companies, diabetes advocacy organizations, magazines, publishers, etc.  I like the work that I do and I like the organizations I work with.

But, but, but.  Who do I work FOR?

The people I work for are people touched by diabetes, and to be honest, that starts with me and my family.  (My oxygen mask on first, right?)  One of the attendees yesterday asked me what kind of advocacy work I did as a kid with diabetes, and I admitted, “None.  I decided to get involved when I was in my mid-20s.  Before that, I didn’t do much at all in terms of diabetes advocacy.” It took time for me to grow into a desire to connect, and that desire was driven by isolation.

I joined this community because I didn’t know anyone in my day-to-day who was dealing with diabetes.  That absence of community drove me to seek out my peers and find people with whom I could be weird together.  And now this community of like-pancreased people can lean on one another and learn from one another in ways and about things that healthcare professionals aren’t able to provide.

Spent some quality time yesterday with the EMHL class of 2017 at Brown University. #rhodypride

A photo posted by Kerri Sparling (@sixuntilme) on

I spoke about the positive influence of patient communities a lot yesterday.  When discussions turned to the silos of healthcare and the dissemination of information, I advised people to take cues from patients who are sharing their stories online for a how-to.  “If you want to see information that’s crowd-sourced and self-policed, hopefully without a whole bunch of egos and competing interests, the online patient communities can give you some tips on how it’s done.  It’s not medical advice but it is honest and shows what illness looks like in the wild.  Patient communities take information from medical teams and integrate it into real life, with better health outcomes as the goal.  And that’s what we all want, right?”

Discussions about “what makes a good leader” took up the better part of the afternoon discussion, and I leaned heavily on bursting the bubble of privilege.  “My job as a voice in this community is to recognize what I have access to and what others are striving to gain access to.  My refrigerator is stashed with bottles of insulin, while some of my fellow people with diabetes are panicked about where their next injection will come from.  I need to remember that and raise their voices, whenever I can.”  (See also:  Spare a Rose.  See also also:  CGM Medicare Coverage.  See thrice-so: DPAC)

I’m hopeful it was an interesting panel discussion to listen to; I learned a lot by listening to my fellow panelists.  Secretary Roberts repeatedly voiced concerns about the different factors that play into health (socioeconomic, literacy, etc) and urged discussions about improving society’s views on proactive health efforts instead of reactive ones.  Dennis Keefe voiced hopes for true universal healthcare and how we can transition to that system most effectively.  Michael Hudson made an excellent point about throwing bias and stigma aside when communicating with one another; we aren’t just “the insurance guy,” or “the patient.”  Each panelist brought their unique flavor to the discussion, and I did my best to inform this EMHL about the crucial need for input from patient perspectives.

One of the other panelists mentioned that high deductible insurance plans force patients to have “skin in the game,” but I’ll counter that being responsible for paying doesn’t give us skin in the game.  We’ve always had skin in the game.  Now we have a voice at the table, and it’s high time we raise it for the betterment of our communities.

I’m proud to work with diabetes organizations, but I’m prouder still to work for people with diabetes.  This community, and all perspectives in it, have improved my life and my health in ways I’ll spend the next few decades gratefully and respectfully repaying.

Entering the Mancave.

There are issues we talk about openly in the diabetes community – tips on how to wear a pump, resources for good diet and nutrition, exercise goals, frustrations with blood sugar control, research, and on and on.  All of these topics matter because they play a role in diabetes management, and life as a whole.  But some of these topics are easier than others.  It can be easy to say, “I suck at counting carbs and I need help!” but it’s another discussion entirely to give voice to, “I’m dealing with reproductive issues and I need support.”

Those personal issues need discussing as much as the topics like counting carbs.  Complications are delicate.  Fertility is delicate.  Sexual issues are delicate.  Depression is delicate.  These topics are raw and riddled with social stigma, but they need unpacking.  Otherwise, they get heavier, already heavy all their own.

I remember when I first read about a woman who had given birth after decades with type 1 diabetes and it soothed a panic in me that was there for years, that idea that motherhood was beyond my grasp.  It was a moment, a good moment, that helped change the course of how I approached becoming a mother.

But I also remember the first time I found stories from people in their 20s and 30s who were dealing with diabetes-related complications.  This moment was good in a completely different way.  My diagnosis of macular edema in 2013 generated more than just a new medical condition to manage, but stirred up all these feelings of failure, guilt, and blame … a deluge I wasn’t really prepared for.  These emotions aimed to drown me.  I wanted to hide.  I had very dark, very uncomfortable thoughts that took me away, in a sense, from my friends and family.  I needed support, and am grateful that I found it.  Conversations with peers about dealing with complications at a point when I still felt young but realized how many decades of diabetes I’d logged helped me get through the initial diagnosis and kept me on the path of taking care of myself in order to preserve and protect, but also to continue living despite this new diagnosis.

“Me, too!” stories can help do that.  They confirm that you aren’t alone in what you’re dealing with and that there is support and camaraderie available even in the darkest of times.

I wanted to share a new website called The Diabetes Mancave, created by a writer who has decided to remain anonymous but not to remain silent, and his website is hosting discussions about the topics of male infertility, retrograde ejaculation, and erectile dysfunction, among other things.  From the site:

“You’re not going find my real name here. That’s because this isn’t something I am comfortable sharing online with these issues, because they are very personal and not something I’m comfortable letting everyone tie to my name.

But that aside, this also isn’t about just me. It’s about these issues, and the larger point of how so many men who may be experiencing these, just don’t share because they aren’t comfortable talking about them.

… In a Diabetes Community where we so often tell each other “You Are Not Alone,” I certainly do feel alone.

I’m hoping the D-Man Cave can help remedy that, to some extent. Because I don’t want to keep this in anymore, and I don’t want to feel so alone.”

Discussions and blogs (and Twitter profiles) like his are long overdue.  I’m really sorry you’re dealing with these issues, Diabetes Mancave guy, but I am so, so grateful you are putting them out there.  I hope you find community and support because by putting your story out there, you’re potentially providing a life preserver for someone else.  Thank you for being brave, and encouraging others to be brave, too.

Follow

Get every new post delivered to your Inbox

Join other followers