#IHearYou

Living with diabetes requires sooooo much effort. The daily requirements of staying alive are relentless and unending. It is messy, unpredictable, and damn frustrating most of the time. The biggest thing though, is that unless you have a friend or community who also has it, you are likely to feel misunderstood. And even when you have friends and community, at times you can still feel largely alone.

Across diabetes online communities, people with diabetes are publicly sharing their stories – stories about their life, their triumphs, and their challenges. We are sharing our own vulnerabilities to elevate diabetes as a condition worthy of awareness, and to help our fellow PWD feel a little less alone. And as communities, our stories generally have an arc of hope, possibility, and strength. We fight for recognition and acknowledgment of the incredibly intense labor we put in everyday, simply to continue breathing.

In recognizing this, I added an action component to my dissertation research. A promise I made to myself when I began my PhD journey was to never do research for the sake of research. I will always do research for the sake of change. Rather than hope that some change would happen once I put results into the world, I worked in a method to elicit change in-real-time. The action group I convened was made up of 8 PWD, called Peer Collaborators. Over the course of a month, they went through a process of identifying ‘the best of what is’ and ‘imagining what could be’ for diabetes online communities. At the end of the month, having reflected a great deal on the strengths and assets of their communities, they designed the #IHearYou campaign.

One of the Peer Collaborators, Kim Hislop, commented during one of our initial meetings,

“I know I am a support person for other people with complications, but where is that person for me?

– Kimberly Hislop

When Kim said this, the group took pause. We racked our brains and wondered why there weren’t more people with diabetes-related complications vocal across diabetes online communities. We wondered if the messages about what it means to succeed with diabetes were too narrow across these groups, and if maybe that was a deterrent to sharing their voice? We also wondered if they were already here, but in effect silenced by all the anti-complication stories taking precedence.

The Peer Collaborators wondered what action could be taken within communities to acknowledge the voices that aren’t often heard, to affirm voices who aren’t on the arc of hope and possibility, and to recognizing the ongoing effort people with diabetes are putting forward to live another day.

At the end of the day, diabetes is just hard. While there are major bonuses, like gaining a community, and learning to know your own body really really well, it sometimes still just sucks. #IHearYou

The #IHearYou campaign was designed by the Peer Collaborators as a listening campaign. The goal is to offer an “#IHearYou” to the people who make the community what it is, with the hope that doing so will promote inclusion

This may look like posting the campaign image and tagging someone in your community who you want to acknowledge. It may look like adding “#IHearYou” in a comment on a blog post or tweet that speaks to you. The campaign was designed to be low-entry.

It is supposed to meet you where you are at.

I hope you will join us in promoting this campaign in whatever form is most comfortable to you.

Without further adieu, I’d like to acknowledge the peer collaborators who designed this campaign. I’m so grateful for the creativity and vulnerability you shared throughout this process.

I wish so so badly that Kim was here to see this campaign come to fruition. She made such a mark on its creation. I’m thinking of her today, and hoping she is feeling heard.

For a wonderful post by Stephen Shaul describing the campaign in more detail, click here.

Officially Recruiting! #DSMA Tweet Chat April 24th

I’ve been updating you about my dissertation research via this blog for quite a while now and I am happy to share a new IRB approved research opportunity happening on Wednesday, April 24th during the regularly scheduled #DSMA chat. Below are some details about the projects as well as the who, what, and when!

Project details

The following research opportunity is one part of my larger dissertation project. The purpose of the overall study is to identify and analyze dominant and counter-narratives within a sample of diabetes online communities (DOCs) in order to better understand how the condition of diabetes is being politicized via online social media spaces. This means I am collecting diabetes-related social media data and analyzing it for narrative themes and their connection to social phenomena. Up to 2,180 participants will be enrolled in this study.

The current research opportunity

I will be hosting a 1-hour long #DSMA tweet chat as one component of my larger project. #DSMA was selected as a research site because it has been a regular meeting place for people with diabetes and caregivers of people with diabetes for a very long time. I, myself, have participated in the chat too many times to count over the last five years! For this study, I will use both my personal twitter account, @Heather_RoseW, as well as the official diabetes social media advocacy (DSMA) account, @diabetessocmed. Please follow both accounts in preparation for the chat.

Who Can Participate?

Any one touched by diabetes is welcome to participate! A tweet chat is designed to be open and free flowing. All who would like to join in can. There will be an opt out procedure linked out several times during the chat. You can participate in the chat AND opt out. This just means that your tweets will not be used for research purposes. If you want to join the conversation but not be a part of the project, clink on one of the opt-out links during the chat.

What Will Be Asked?

Below are the questions that will be asked during the chat. Please feel free to prepare your responses ahead of time!

  • What is the most common diabetes misconception you hear and how do you react when you hear it?
  • What do you wish people knew about diabetes?
  • To what extent is diabetes a part of who you are? 4) How would you describe your diabetes-related online interactions to a person without diabetes?
  • Why do you participate in the #dsma tweet chat?
  • Imagine a diabetes-related hashtag you made up went viral, what would the # be and it what would it be about?

When will the chat take place?

The #DSMA chat will take place on Wednesday, April 24th during the regular #DSMA time, 9pm EST. The chat will last one hour.

If you have any comments or questions, please email me or write in the comments. I’m so excited to be able to share this opportunity with you. Another post with all opt-out information will be posted the day of the chat.

Work-Life Balance?

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Life in academia is lonely. The social-scientist/academic’s work-life revolves around creating new knowledge, generating nuanced understandings of social systems and communication, producing and or critiquing theories of behavior and relations. It is lonely because the academic sees something others don’t. We have ideas that most of our acquaintances do not understand or can’t understand without first reading a tome of context into the topic. We have magical revelations, but few to share them with.

I’ve been getting questions lately about how I’m managing to ‘balance’ my life as a working mother with chronic illness.  So, I am taking a brief moment to share something that not only makes every Monday more bearable, but that has really changed my feelings of academic isolation.

Every Monday for the last 6 weeks, I have been meeting with a friend and fellow Ph.D. candidate to discuss the progress we have been making on our dissertations.  We also discuss our non-dissertation work responsibilities, hobbies, manuscripts in progress, and the like.

Writing a dissertation is no joke. There are a million little steps involved and it is damn difficult to keep everything straight. During our meetings, we chat about the tough stuff, and then we make a plan for the week. We check each other.

In our meeting today, my friend said,

“Can I be realistic here? This is what it sounds like you’re saying… 161-1610667_cartoon-comics-explosion-labeled-stellate-comic-book-explosion

…maybe take a break from dissertation stuff this week?”

We joke a lot and nervously giggle about the ridiculousness of the lives in academia we have chosen, sometimes unapologetically questioning “what is the point?”

I don’t think I realized how much I was in need of a friend who was aware of what I was doing on a regular basis. I didn’t realize how much balance would come from simply knowing that someone sees my work.

And right now in my life, when someone sees my work, it feels like they see me.

Today at the end of our call, we ended up picking mascots. She is a banana slug, and I, a walrus slug. I can’t even remember why. But it was fun laughing about it and now I feel more prepared to (even if sluggishly) do the tasks I need to complete this week.

For the first time, I am looking at the work-life balance not as something to accomplish, but something to share. Maybe it isn’t about what you do, but how you do it, and whom you do it with.

Sharing about specific work-related issues and goals isn’t the only factor involved in the concept of the work-life balance, but it certainly is a big one.

And today I’m feeling like a lucky bug because I have someone to share it with.

My Research is Approved… Almost!

I’m thrilled to spread news today that my dissertation committee approved my project. I now am ready to share more of the study details and story of how we got here. I will note up front, however, that I am still waiting on approval from the ethical review board at my home university before I can officially begin with data collection and participant recruitment and all that fun stuff!

Hence, my research is approved, sort of.

Before sharing the details of the project, I’d like to explain a part of the process which has haunted me a little bit. I got a bit over eager when I first put all the pieces together for my first proposal defense. I even conducted some of the research activities under the impression that it was feasible since it was helping me develop the project. I was wrong about that. I was gently scolded by my committee and then reprimanded by the IRB! To those community members who I have worked with on dissertation-related projects, I will be able to contact you again regarding this after the proposal is approved by the ethical review board!

Now, on to the project details!

BACKGROUND

Across social media platforms, persons with diabetes engage in discourses on the condition of diabetes. Topics discussed range from basic illness symptomology and treatment to taboo intrapersonal tips on how to have sex while wearing an insulin pump. Among these topics is representation. Persons with diabetes discuss stereotypes and stigmas attached to the diagnosis. For example, some may cast doubt on the connection between diabetes and overeating, while others may promote a representation of the diabetic athlete unhindered by their disease. Some seek normalcy through shared experience with peers in online fora. Diabetes online communities (DOCs), of which there are several spanning a variety of social media platforms, have been documented as sites of cultural and peer support exchange. While some research has been done to understand benefits and consequences of participation in DOCs at an individual level1, none has examined it as a location of representation discourse. Counter-narrative social media movements like #IWishPeopleKnewDiabetes, #InsulinForAll, and #WeAreNotWaiting are active forums for both individual and collective cyber-activism. Though the condition of diabetes has been depoliticized through individualization in media, healthcare, and academy, discourses taking place on social media suggest that the diabetes lived-experience is political. It is vital that methods which capture the sociocultural context unfolding across diabetes online communities are used to examine this. Again, however, very little research has yet to take this approach. The purpose of the overall study is to identify and analyze dominant and counter-narratives within a sample of DOCs in order to better understand how the condition of diabetes is being politicized via online social media spaces.

METHODOLOGY

The framework for this study will employ the philosophies of two methodological approaches, namely participatory action research (PAR) and netnography. PAR emphasizes community collaboration, action-oriented participation, shared ownership throughout the research process, and social change-making2 and netnography emphasizes researcher immersion, cultural exploration, thick description through field notes and interviews, and iterative data analysis of online groups3. These two frameworks will provide a cultural, action-oriented lens through which to examine DOCs as cultural sites. Both frameworks require the use of reflexive methods to guide research design and analysis4 and offer opportunities for researchers to focus on collective and connective apparatuses of mobilization and social change, rather than individualistic outcomes and changes5. Lastly, the flexibility of these approaches allows for overlapping research activities that inform each other. The netnography is member checked by PAR collaborators, and the PAR collaborator meeting discussion and content are informed by the netnography.

Cool, Huh?

At this point, I am sharing for the sake of releasing this information up front. I will continue to post about the progress of this project and list any engagement opportunities moving forward.

For now:

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Research Opportunity with Policy Implications: #InsulinForAll

One of my goals with this blog is to share research opportunities with you! And today I have an exciting one to share. I’ve been involved in the development of this survey, but played only a very small role. I was involved enough, though, to vouch for it and the implications the results will carry.

This 25-30 minute survey asks about the financial challenges related to accessing diabetes medications and supplies. It asks about the experiences we have had with trading, selling, and donating our supplies to help each other out.

This topic is so important right now with the price of insulin soaring and a larger percent of PWD not being able to afford it. I personally have had to borrow insulin, test strips, and pump supplies from friends just to get by. When I was pregnant I had terrible insurance and was forced to think about my insulin usage in a different way.

The survey is de-identified, so there is no risk that your responses will be tied back to you. I realize that it can feel unsafe to give researchers this information as trading, selling, and donating supplies is technically ‘off label’.

There are policy implications of this survey that could benefit the movement to make insulin more affordable. So I urge you to please take the time to fill out this survey and share it with your diabuddies and DOC friends (also applicable to parents of kiddos with diabetes and partners).

If you have #diabetes or care for someone who does, please consider taking this anonymous survey. https://bit.ly/2Bdsgsy #T1D #T2D #insulin4all

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A Little More on Motherhood, Chronically Speaking

A dear friend sent me an article yesterday called, “Invisible Labor Can Negatively Impact Wellbeing in Mothers” by Kimberlee D’Ardenne at ASU. The article discusses a recent study asking mothers about their role in parenting and home as well as about their life satisfaction.

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The article and research findings were striking but also a big ol’ DUHHHHH.

When asked about the division of labor in the household, 90% of women reported they are solely responsible for organizing family schedules and routines, even though 65% of them are employed.

The article explores this idea as invisible labor. It argues that mothering is labor that isn’t seen or recognized. It is done without pay, and generally without time off. In my studies, this kind of work has been called informal labor, but labor all the same. Mothers who reported being solely responsible for their family’s routine, schedule, and the like were found to have decreased levels of satisfaction with their lives and relationships. And these women feel less satisfied in part because they don’t have time for themselves or their own self-care.

When reading the article and the corresponding study, I begin thinking about mothers who have chronic illness(es) on top of having a job and or career. Further, I began considering my own experiences with motherhood and chronic illness. I share the following not to toot my own horn, but to expose what I think is a fundamental cultural flaw that I at some point in my life deeply internalized.

I am the mother of a 15-month old. I work two part-time jobs. I am finishing school to earn a PhD in Disability Studies. I am working on completing nine manuscripts for scientific journals. I am also writing a book. I take 75% of the household responsibilities, maintaining the family calendar, transporting Bubs to and from daycare daily, grocery shopping, etc. My husband helps every chance he can, but his work schedule is so demanding that that help is limited. On top of all that, I have multiple chronic illnesses that I have to manage every day every hour of every day. Doing all of this should not be seen as impressive, it should be seen as foolish. I am spreading myself too thin because at some point I internalized the notion that success looks like doing it all. Deep inside my psyche is a fear that if I don’t accomplish specific things, I will not be accomplished.

I’m tired.

I feel valued, but being valued doesn’t improve my level of exhaustion. Being valued doesn’t help me take time for me. And I think this article turned something in my mind. Below is the excerpt that did that.

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We talk about mothers needing more time to “self-care” while they take care of their partners and children and dogs and cats and fish. With chronic illness, I’ve always known and believed that when I am able to self-care I will do better with my disease management.  Herein lies the problem inherent in motherhood and in chronic illness (and rampant when combined). All the care of the mother and the person with chronic illness is the responsibility of the mother and person with chronic illness.

Mothers need to be cared for. Mothers need to be nurtured. Caring for them doesn’t stop at giving them time and space to self-care. This idea is so foreign to me that I don’t even know what it would look like. In my home, I feel loved. I feel loved and valued and appreciated for all I do. I feel cared for in that my husband and family care about my well being. However, I also feel like if I stopped the labor of caring that I do, there would be chaos. It’s a chaos I think would organize itself overtime in my absence, but it would be such for a long while. To say people care for is true. To say the labor of caring for myself is solely on me is also true. This applies to motherhood and chronic illness as they exist separately and as they overlap.

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If chronic illness was added to the mix, I wonder how the study results would change? I also wonder what would surface if the researchers asked mothers what it would look like to them to be nurtured, to not rely on self-care, but to be cared for with invisible labor from their partners and or children.

What would it look like to you?  To the women who don’t have children but who have chronic illness or a disability, what would it be like to not have to self-care because your partner or parent took on the labor of caring for you? Is this a fantasy, or are there things we could do to allow our loved ones to share in the invisible labor of caring?

I don’t have the answers. Though I am fully prepared to embrace any suggestions for how to move away from my own internalized oppression and allow those around me to share in the labor of caring.

FUNDING! Get out?!?

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I am still in a state of shock and disbelief about what I am about to share… It’s good news, no, great news. It’s the news I needed to ‘just keep swimming.’

You see, I had recently failed my proposal defense. The defense was brutal; it totally kicked me down. I was excited and engrossed in the carrying out of my project going into it, and completely deflated by the end. In just two hours, too. Three years of planning, networking, learning, and heart-investment just felt a waste. I took about two weeks to feel that ickiness. I allowed myself the time to think about it and process. And then, I moved on.

I started throwing myself into projects. The result of which is three completed manuscripts and four more in progress. Also, I am writing a book with two friends and colleagues (more on that in another post). I shifted modes and started giving more time to the academic work of others, helping them work through hang-ups like I was, in that same moment, experiencing. I scoured the internet for funding opportunities, open collaborations, speaking engagements, and the like. I’ve been applying to so many things the last month I had to start a spreadsheet to keep track!!!

Having emerged from that haze of applications, I can say with undue honesty that my underlying goal was to find a source(s) of external validation. I desperately needed to feel of value in this particular way. And in that process, I went from feeling like a failure with bunk ideas to a thoughtful and masterful researcher again. Rather than build myself a ladder to climb out of the hole I was in, I dug a system of tunnels!

All of this is to share the impetus behind the GREAT STINKIN’ NEWS!  One of the applications I submitted was a grant for the UIC Provost’s Graduate Research Award. It’ s $5,000 grant to support preliminary dissertation research. And guess what?

I WAS SELECTED!

MY DISSERTATION IS FUNDED!

This is huge news in the academic world, but also for the community members I am and will be working with throughout the rest of my journey as a graduate student.

You all, I get to PAY YOU for your time and ideas.

I’m over the moon and back on the horse. I am planning to share a series of blog posts to discuss what my project is and how I will be doing it. I can’t wait to get this thing finally approved and move onward, my friend, onward.

For now, I will leave you with the suggested title:

Politicizing the Condition of Diabetes Online: Counter-Narratives and the Pursuit of Normalcy

Whoo hoo!! Let’s do this thingy!

Diabetes and Motherhood

My pregnancy was a surprise. It was a happy, warm, lovely, surprise, but also a terrifying one. My diabetes wasn’t well managed and my life wasn’t where I thought I wanted it to be before starting a family. I was gearing up to write my masters thesis and, well, I’d recently been mugged and was filled with anxiety about the brevity of life. I wanted to accomplish my goals, only one of which was becoming a mom. When I learned I was pregnant, I was afraid I’d already caused the fetus damage. The day prior to peeing on that stick my blood sugar rose to 513. I’t’s been over a year and a half and I still remember that number. I was also relieved to learn I could conceive. Finding out whether or not I ever could is something I was dreading. I so badly wanted to experience pregnancy and to have a baby, but a little bit of me never wanted to try in case I couldn’t. I feared that heartbreak. But, there I was, unexpectedly pregnant. Both celebrating my ability to create life, and crying through the unknown of getting through a pregnancy with diabetes.

Pregnancy was not a glowy time. My feet were swollen, I had epic heartburn, I cried all the time, and I had to get down on one knee to pick up the dog’s poop. I had so many doctors appointments I had to delay taking the oral part of my preliminary exams, and I was as tired as a night owl at dawn. But, I got through it. I got through it with the best diabetes management I’ve ever had. Also, I was a forking boss at birthing that baby. I labored for 48 hours and then had a non-emergent cesarean section.

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Then, I became a mom. My son, called Bubs on social media, is a light in my life. He is one of my motivators for good health and a source of happiness. As a mom, there is this little bit of fear that creeps up now and again, though. I try and repress it, or face it and accept it. But it is cyclical. Even when I accept it, it comes back in new ways. It is diabetes. It’s my diabetes and the fear that I may pass it to him. It’s the fear that he may see me have a seizure one day, or have to intervene to help. This is a fear that just sits there, dormant until it’s not. And I think it just sits there because it’s an unknown.

When Bubs was just four months old, I did have a seizure in my sleep and he was in the room. There is little I’m more thankful for than the decision to not co-sleep that night. I scratched the fork out of my own face during the seizure, the effects of which remain in scar-form below my right eye. I’ve had a couple other diabetes-related sicknesses recently that reduced my capacity to care for him.

Being a mom with a chronic illness is a careful psychological balance of acceptance, self-care, and pushing through the tough stuff. I’ve never felt so tested, nor so rewarded. But, by golly, this shit is HARD. I need more help than I’m usually willing to admit, and I’m always wondering if what I’m able to do and give is enough.

I have talked with other mommas with chronic illness about this, and some other moms who don’t. Guess what? We all feel this way. We all worry that we will not be able to be what and whom our kids need us to be. We all play a game of push through and surrender, push through and surrender. We all hope and cross our fingers that our kids will accept us as we are, with all our flaws, disabilities, and eccentricities. We are all just doing the best we can with what we have got going for us.

My goal in this post is not to claim normalcy or to align my diabetes motherhood with the able-bodied experience. Our experiences are different. Motherhood with diabetes is not the same as motherhood sans diabetes. I will never have just motherhood. But, I’m okay with that. I know that the challenges in my life have mostly made me stronger. Some have broken me down, but mostly I’ve come out of traumas with growth.

Life with diabetes has taught me that motherhood with diabetes is a damn good opportunity for growth. Parts are going to forking suck. But, other parts are going to be beautiful. Motherhood with diabetes is something I will never take for granted. Motherhood with diabetes is motherhood, and I’m ever grateful for that.

Now, if I could just get through all this laundry….

On the question of disability… (again)

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I am currently taking my last formal class toward my PhD in Disability Studies. Yahoooo for milestones! The class is called Disability Oppression and Resistance. In class last week, my professor made an argument that clarified the question of disability as it relates to diabetes (though he wasn’t applying his argument directly to this).

He argued, “You don’t have to know you are disabled to be disabled, if society treats you as disabled then you are! Society chooses.” In other words, what determines your qualification as disabled does not depend on your willingness to identify, nor does it depend on the physical impairment you may have. Rather, it depends on how society treats you.

In the context of diabetes, then, I’m considering, how does society treat us? Based on my lived experience, constantly hearing things like “I could never do that,” and “you should not eat that, right?” leads me toward the conclusion that we are treated like we are different. And moreover, we are treated like we are different in the bad kind of way. And this reflection is not just individual. There are systemic ways we are treated differently. For example, I have over 2k in medical bills I’m slowly paying off because my body doesn’t function typically, because it needs more. We’re made to pay outrageous prices for medications without which we will literally die. This is oppressive. I’d love to take that 2 grand and travel to Europe. I have able-bodied friends doing that right now.

Based on my studies and deep dive into disability identity theories – reading about the marginalization and degradation of minority identity- leads me toward the conclusion that society treats us as Others (the capital O indicates a marginalized other). But, from what I’ve seen, our collective resists that. It’s complicated.

In the diabetes world, we reproduce a relatively sticky social contradiction. We fight for our right to accommodation at school and at work. We simultaneously fight to not be seen as limited by the condition. We want the benefits of association without the stigma we believe is attached to it. Can we have both? Or is this contradiction holding us back?

As I continue to develop my dissertation project, I’m curious about what we resist, how we resist it, and what we are trying to accomplish. What are we hoping for by spreading awareness messages? If we are fighting against being associated with the disability identity, what do we hope will come from others thinking we aren’t? If we are fighting against the diabetes stereotype, where do we direct our messages? What changes are we hoping to see?

If there are gatekeepers, who are they, where are they, and how do we get to them? When we lodge counter-arguments to the social construction of diabetes as the lazy person’s disease, who do we send them to?

I want to know so much more about the oppression we face and what we do to resist it. What do you think about this? What do you resist? What engages your cyberactivism? Where do you think we are headed from here if we continue to resist the ways we have been?

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Where I’ve been

I’ve been silent on this blog since May of last year because I took the time to focus on my MS thesis and then passing my preliminary exams toward my PhD. Oh, and I had a baby. You can look forward to this blog picking back up now.

I’m a working mom who brings her son to work because childcare would cost me more than I make working. This blog will occasionally contain my kid. I call him Bubs.

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