And I’m not exclusively talking about endocrinologists here, because really, they’re the ones who specialize in diabetes…so, you know, they are supposed to just get it.
I’m talking about the other medical professionals that people with diabetes might see in addition to their endocrinologist.
Take me, for example…I see a primary care physician, a dentist, an allergist, an OB/GYN, and an ophthalmologist.
And only a couple of those specialists really understand what it means to have a T1D patient in their care.
For example, I saw my allergist back in February (before all this COVID stuff) to see if she could switch me to a nasal spray that cost less than the $45 per month I was paying (because let’s be real, if I can save money on a prescription, I’m going to do it). The appointment was supposed to be quick and easy, but it turned into a two-hour affair (!) because she was concerned about my asthma.
I highlighted my issues with asthma in a post from January. The big takeaway from my most recent spells of wheeziness is that the inhaled steroid I was taking to deal with it at the time was making my blood sugar skyrocket, and I felt like I had to choose between breathing comfortably and maintaining healthy blood sugar levels…not an ideal this-or-that scenario by any standards.
So when my allergist detected some “squeakiness” (her words, not mine, and it makes me laugh because that’s a cute way to refer to the rasping gasping of asthma) in my lungs when she was listening to my breathing with a stethoscope, she asked me to catch her up on my history with asthma. When I did, she immediately understood my reluctance about taking the inhaled steroid, and prescribed me a new medication that will reduce my asthma symptoms as well as some of my allergy symptoms.
I’m never going to be thrilled, per se, about adding yet another medication into the mix: It’s just one more thing that I have to remember to do each day at a certain time. But what did excite me about this prescription is that I’ve noticed a real difference since I’ve started taking it. And more importantly, I felt heard by my allergist. She didn’t write off my concerns about the inhaled steroid, she took extra time during the appointment to run tests, and we had a back-and-forth dialogue in order to get to the bottom of things.
It was a stark contrast to the appointment I’d had with a nurse practitioner from my PCP’s office in which I was prescribed the inhaled steroid DESPITE having voiced my concerns, and the appointment was over within minutes.
It’s a bummer that not all medical professionals “get” diabetes, but it’s also a reminder that as patients, we can make a difference by continuing to advocate for ourselves until they do understand.
This post was originally published on the T1International website on June 15, 2020, and is written by Sydnee Griffin. I reached out to Sydnee and asked if I could re-post it here because Sydnee’s words opened my eyes to the medical side of racism and the importance of supporting my Black friends (and all Black voices) with and without diabetes. Thank you for sharing your story, Sydnee.
My diagnosis story is so similar to numerous other type 1’s, I almost never tell it. I had the weight loss, the extreme thirst, the irritability, and the constant hunger. Paired with abdomen pain that was similar to that of menstrual cramps, all of these things signaled ‘puberty’ to my 16 year old brain. I had been living with the discomfort for so long, it was no longer new to me.
I remember a handful of things about being admitted to the hospital and the time I spent there. The first is the hospital staff telling me if I had gone home and waited for the test results to come on Monday, I probably wouldn’t have made it through the weekend. The second is the amount my family needed to advocate for my care during my stay. From the office of my primary care physician to the hospital itself, my mother had to speak up in order for me to get the treatment I needed and in a timely manner. Though the initial night of the hospital is fuzzy, I remember my mother going back and forth with the ER technicians imploring that I needed to be put on an IV ASAP. She noted that I had lost significant color and all of the questioning could be done while I was hooked up. The back and forth seemed to go on for hours. When I left the hospital I remember wondering, “Why did my mom have to beg those people to do their job when I was visibly sick?” A few years later after I had dealt with numerous visits, checkups, and insurance calls, I became aware of the medical side of racism.
A quick Google search will take you to a few sites that define the term medical racism (i.e. racism and prejudice that carries over into the medical field) and even more articles about the instances occurring. What do Beyoncé, Serena Williams, and I all have in common? We all have experienced medical racism that could have easily cost us our lives – and so have numerous other Black people. It’s one of the things I don’t share with my white friends that I’ve made online who have type 1 diabetes.
Another occurrence I see fairly often with my non-white friends with diabetes is questioning over their diagnosis. My friends who look like me are familiar with the question, “You’re type one? Are you sure?” This is a question that my white friends are rarely ever asked. This is because type 2 diabetes is more prevalent in communities of color, but also because type 1 diabetes organizations and type 1 diabetes social media accounts often promote the image of the skinny white kid as the face of type 1 diabetes.
I recently made an Instagram account to help connect with others living with type 1 diabetes and to become a face of the community. Before I got involved, the biggest thing I noticed was the lack of Black representation on diabetes Instagram. There are a handful of them that I follow, and it’s great that they’re there – but I had to scour Instagram for them. So even, as they exist, they’re not getting nearly the same amount of attention or recognition as their white counterparts. And it’s easy to say, maybe their content isn’t as engaging (you’d be wrong, but let’s entertain the idea!) – you mean to tell me not a one of them is as popular as your local white type 1 blogger? I can search through the hashtag #t1dlookslikeme and not find a single Black person under the “popular” posts.
These are the things that contribute to both misdiagnoses in the doctor’s office and stigma outside of the doctor’s office. These are the things that need to change and the things that we can change that don’t involve getting a degree in medicine.
How can we change them? For starters, follow and highlight local Black and non-Black POC on social media. Listen to their stories, speak out and support them. Right now, I’m seeing a ton of white people with diabetes online who are complaining about people wanting them to speak up on the protests and police brutality occurring now. Some see their account as something that’s only for diabetes content. Hearing that is really disappointing, as I’ve pointed out to quite a few of them. Because I’m Black and diabetic every day.
I have to worry about police brutality in addition to blood sugars and health outcomes. So when they tell me they don’t think the two are related, or “diabetes content” it really shows me where their head is at. It is a privilege to solely be marginalized with your one disability. I have had to grapple with myself as a Black person about whether or not I am doing enough with signing petitions and donating, because I can’t be out protesting due to living with diabetes and COVID-19 still being prevalent. It is a privilege to not have to worry about diabetes and COVID-19 and a privilege to not have to worry about being racially discriminated against in a healthcare setting or any other setting.
To my Black diabetic friends – I am here online if you need an ear, or support, or help in any way. Please don’t feel like you’re alone. We are here, we are strong, and we aren’t going anywhere. For anyone looking to get educated right now, myself and lots of other Black social media users are posting helpful resources on how to donate and support even if you’re immunocompromised.
Don’t think that you as a white person or non-Black POC need to necessarily make a statement. There are tons of Black voices you should and can amplify in this time. We are similar in so many ways when it comes to this disease, but we are also different in so many as well. You have Black friends. You have friends with diabetes. Both see you when you don’t support them. They notice as you advocate for affordable insulin to save their lives, but don’t declare that their Black life matters. You need to know their lives are in danger in more ways than one. Support them through this like you would support them with any other diabetes related struggle.
Friends, I am pleased to share that I have been nominated for a WEGO Health Award. My blogging for Hugging the Cactus has qualified me to be a Patient Leader nominee for the “Best Kept Secret” award, which is very exciting to me! What’s more, if I advance to the finals round, I may be able to win a trip to Las Vegas for the HLTH conference in October. This would provide me the opportunity to be around other Patient Leaders who, I’m confident, I could learn so much from, as well as the rare chance to attend a health-focused conference based on merit rather than cost.
What exactly are the WEGO Health Awards? They were created to recognize and honor those who strive to make a difference in the online health community. In the past few days, I’ve scrolled through the growing list of nominees who are advocates for all sorts of conditions, from anemia to ulcerative colitis. It’s quite eye-opening to see just how many health topics inspire individuals to spread awareness via social media, blogs, podcasts, YouTube channels, and more. And it truly is an honor to be listed among these incredibly inspiring nominees.
If you feel that I deserve to move on to the semi-finalist round, please follow this link to endorse my nomination. By clicking the link, you can view the other nominees and their profiles, which I strongly encourage so you can find out for yourself the sheer volume of skilled storytellers out there. Plus, you never know, you might just discover someone who you can relate to or who inspires you. After all, in a world of chronic conditions that can feel so isolating, isn’t it always a comfort to find out that you’re not alone?
One Monday per month, I’ll take a trip down memory lane and reflect on how much my diabetes thoughts, feelings, and experiences have unfolded over the years. Today, I remember…
…that one time in college when some random kid sitting near me in class said that having diabetes means “you’re screwed”. In other words, you can’t live with it, it’s a death sentence.
Before I talk about how I responded to that, I’ll provide some context. It was my freshman or sophomore year of college. I was in a discussion group for my Nutrition 101 seminar. It was early enough in my college career that I still felt painfully shy around most of my classmates, unless they happened to live in my dorm or I had known them in high school (even though I went to a college with an undergraduate population of more than 20,000, I’d still occasionally encounter a high school classmate – it’s a small world after all).
But when it comes to diabetes…well, I have a reputation for not being able to shut up about it. So when it inevitably came up over the course of the Nutrition class, and the teacher’s assistant asked us to define it, I felt a natural impulse to say everything I knew about it. I had to suppress it, though, because my fear of raising my hand in class was stronger than my desire to spew out an overly in-depth definition of diabetes.
So I let someone else answer the question, noting what was right and wrong about the response. As the T.A. launched into her notes on diabetes and nutrition, I overheard a muttered, ignorant comment from the kid next to me:
If you have diabetes, that means you’re screwed!
While the dude sitting next to him laughed, I felt instant rage surge throughout my body. Without even thinking, I blurted out loud, just audibly enough for him to hear, “No, having diabetes does not mean you’re screwed. Whether you have type 1 or type 2, you can live a perfectly normal life with it. I would know, I have type 1.” I felt my face flush as I turned my attention back to the oblivious T.A. in the front of the room. In the corner of my eye, I saw that the kid was sitting there, mouth slightly agape, probably surprised that the quiet girl in discussion group spoke up to shut down his idiotic way of thinking.
It’s been several years since I was in this particular class, and I don’t remember much of the materials that were taught in it. But I do remember this exchange. It stands out to me because it’s a reminder of how far we’ve got to go as a society to defeat diabetes stigma and prove that you can do more than survive with diabetes – you can thrive with it.
This blog post is a response to a prompt provided by my friends at the College Diabetes Network, who are celebrating College Diabetes Week from November 12-16. Even though I’m no longer in college, I like to participate in CDW activities as much as possible to show my support for the CDN!
Invisible illnesses like diabetes can be difficult for healthy people to truly understand. Typically, they only see bits and pieces of it; for instance, when someone performs a blood sugar check or injects insulin. There’s so much that they don’t see: doctor’s appointments, late/sleepless nights, complex calculations, careful monitoring, and so forth.
But what’s really difficult for anyone to see is the emotional impact of diabetes.
Unless I choose to open up to someone about it – which is easier said than done – then there’s no way for another person to grasp the magnitude of the emotional side of diabetes. There’s no way for someone to feel the incredible amounts of anxiety, fear, and anger that cycle through me as I deal with diabetes. While I don’t experience these emotions every single day, I DO have to experience diabetes daily, and it’s impossible for someone to know what that’s like unless they either have T1D or care for someone with it.
I don’t wish for anyone in the world who’s unfamiliar with the (literal and emotional) ups and downs of diabetes to actually learn what it’s like. But I do wish for a world that’s a little more understanding, accepting, and educated when it comes to all things related to diabetes – and that’s why I advocate.
Diabetes Awareness Month may have only started a few days ago, but boy, has it been jam-packed with advocacy and awareness efforts so far! In fact, I think this is the most active year yet for most social media platforms. I’ve seen tons of different campaigns, hashtags, and posts that were all created especially for this month, and it’s absolutely wonderful to see such inspired content as well as high participation rates.
And I hope to keep the ball rolling on this! That’s why I’m sharing my #NoMoreFingerpricks post today. This campaign was launched by Dexcom and Beyond Type 1. Participants are encouraged to take a picture or video wearing the foam finger from Dexcom, or to draw an “X” on an actual finger (if they don’t have a foam finger). For every photo or video posted on Facebook/Instagram with an @Dexcom and #NoMoreFingerpricks, Dexcom will donate $1 to Beyond Type 1.
Yup, it’s that easy to do! And it’s exactly the kind of social media campaign that can catch on quickly. Recruit your family and friends to take photos and get posting! And be sure to teach them a couple of diabetes facts and what the whole #NoMoreFingerpricks hashtag is all about. For instance, you could mention that:
34% of people with T1D know nothing or little about CGM
80% of people with T1D still prick their fingers more than 3 times a day
96% of CGM users would recommend CGM
You could even direct inquiring minds to visit nomorefingerpricks.com to learn more about continuous glucose monitoring technology and this campaign.
So…what are you waiting for?! Draw an “X” or grab that foam finger and post your photo to educate, advocate, and celebrate living beyond!