Please say hello to T'ara Smith, a great new voice in our Diabetes Online Community!
T'ara is leading the newly launched Beyond Type 2 online network from the powerhouse non-profit Beyond Type 1. Originally from Baltimore, she's now living in San Carlos, CA, where the organization is based. T'ara was diagnosed with prediabetes in her first year of college and that led to an eventual T2D diagnosis several years later -- but it turns out that was a misdiagnosis, as T'ara's just recently learned that she's living with Latent Autoimmune Diabetes in Adults (aka LADA, sometimes referred to as Type 1.5).
We covered the launch of Beyond Type 2 early in the year, and today we're thrilled to talk with T'ara about the initial months with BT2 and her own diabetes journey.
Talking 'Beyond Type 2' Diabetes with T'ara Smith
DM) Hi T'ara! Can you start by telling us about your first brush with diabetes?
TS) I was diagnosed with prediabetes at 18, after my freshman year of college in 2010. My doctor told me I needed to lose about 20 pounds and I did, but I ended up gaining that weight plus more a couple of years later. I was at a pretty low point in my life and was depressed. But a couple years later, I decided to change my life around and lost weight and got my blood sugar under better control. I also decided to go into the health field, mainly because I was hoping to prevent a diabetes diagnosis and just wanted to be healthier. But four-and-a-half years after that initial prediabetes diagnosis, I was diagnosed with T2D. At the time, I was pretty numb to the news. My doctor came in and said ‘you have full-blown type 2 diabetes,' with a blood sugar of 556 mg/dL and an A1C of 15.6%.
Was that diagnosis a surprise for you?
No, I don’t think I was necessarily surprised because diabetes runs in my family – my grandmother has diabetes -- so it’s always been on my mind, plus I had experienced some weight issues before that. Also, I’d had the symptoms for months before that and was losing some of my hair, was losing weight, and was always thirsty and hungry. My mom also noticed that I’d gone from drinking a gallon of water a day to twice that amount each day, and suggested I get checked out.
But I was sad about the T2D diagnosis, because I really thought I had done everything right. I had lost a bunch of weight, was at my healthiest point and was even trying to be a fitness competitor at the time. To know that it led to a diabetes diagnosis anyway despite my efforts was not something that felt OK.
How did you cope?
This is what life had dealt me, and I tried to move on... but I did go through some denial at first. I was eating things that I probably shouldn’t have been, and was going out to eat more, in a way to maybe show diabetes in hindsight that it didn’t have control over me. At the time, I was in grad school studying nutrition education, so I knew how serious diabetes was and what would happen if I didn’t get my blood sugars under better control. After some of that denial and eventually accepting it, I made the changes I needed to personally and also decided to focus the rest of my academic career on diabetes research. I was writing a lot about diabetes management and the mental health aspects, and that’s when I decided to go into industry.
What made you choose a health career path, specifically?
The shift to get into nutrition education came as a result of my own personal health journey, but also because I love food and love to cook, and love to be able to make healthy foods taste really good without any extra sodium, fat and sugar that’s often in processed foods. When I saw the effect it had on me and my own health, that’s what I wanted to do for a living.
So I’d say it was partly inspired by my own prediabetes diagnosis, but also because of my love for food and how it’s supposed to make you feel, as well as the emotional eating issues I’d been dealing with.
Can you share more about those mental health and emotional eating issues you’ve dealt with over the years?
I’d been at a place where I didn’t like to look at myself in the mirror. It was actually a trip to Las Vegas after I’d just turned 21, and I can remember that day so vividly. I was wearing a light lime green long-sleeved shirt, a pair of jeans that were too large, and a blue blazer that I still have now. I remember noticing that I was larger, and it didn’t matter how I tried to pull my pants up higher or my shirt down lower to cover up the extra fat that was visible… I just couldn’t hide it. That really brought me to a place where I was so disappointed in myself, despite that I’d known what the consequences would be if I didn’t get my weight under control but I had let it happen anyway. At that point, I felt hopeless and disgusted with myself.
The next month, I read a blog called “A Black Girl’s Guide to Weight Loss.” The woman who runs it is one of the first I found in the online health community who really talked about health and weight loss from a “real person’s” perspective. She talked about the need for nutrition and had some amazing tips and information on how to get started.
As a college student, I took a gamble on myself and threw away a lot of the food in the cabinet that I’d just bought -- I didn’t have a lot of money, but I was determined to take a complete, cold-turkey approach on this new journey of mine. I also started running, and challenged myself to run my first 5K race – which I did that next month. That was what got the ball rolling for me, but was one of the toughest things I’ve ever had to do.
It was about getting real with myself, and re-defining my relationship with food and how it made me feel. Food was always a comfort, it never judged me or told me how to feel or that I’d get diabetes; it just made me feel good in that moment. But in getting healthier, I had to see what else I could turn to instead of food, like running. Oddly, cooking became that replacement too, because it wasn’t about the satisfaction of eating but the creativity and control of my cooking. Those were the empowering aspects that started the health-change for me.
How did you get connected with Beyond Type 1 initially?
I was at the American Association of Diabetes Educators (AADE) conference in August 2018 in Baltimore, which is where I’m from. It was my first diabetes conference, and I'd just graduated from grad school that May. I was in the audience of a panel discussion on peer support and stood up to talk about the importance of peer support and online communities, and the need for diversity in the diabetes community. I spoke as a young black woman with type 2 diabetes as well as other regular life issues like student loans and trying to find a job, how all that makes managing diabetes more challenging, in addition to making sure I have access to insulin and have health insurance coverage.
Afterward, I was approached by Beyond Type 1’s Thom Scher and we chatted about different ambassador opportunities within the organization. They hinted at the time that they would be moving toward something on type 2 specifically and were looking for people within the T2D community. And about a month later, I was looking for a new position because of changes at the company I was at then. I had just been finding stability within my own healthcare, having insurance and a doctor, and I was scared about losing all of that. I posted on LinkedIn about health-related positions in the Baltimore/DC area, and Thom reached out about possibility moving to California. There was interest and it’s kind of history from there.
What drew you to that organization?
I love what they do. It’s just so modern, and they have a great upbeat approach to talking about diabetes. It was refreshing to see it talked about in just a colorful, real way rather than the bland, clinical way we often see it talked about. I was thrilled to join the team.
Had you ever connected with the DOC before all this?
No, I really didn’t see any diabetes blogs online at the time that I could personally identify with. There were weight-loss blogs, but not really any on (type 2) diabetes or ones that really resonated with me. This was also before I was on Instagram and when I just on Twitter and Facebook.
Social media has really changed the game in how we talk about diabetes and there are thousands of accounts online. How it’s portrayed online now is so different from even a few short years ago, and people are open about their experiences and treatments from a patient’s perspective. It’s more open and inclusive now.
For those not familiar with it, can you share what Beyond Type 2 is all about?
Beyond Type 2 is a new program of Beyond Type 1, launched in January 2019. It’s for people impacted by type 2 diabetes to share their stories, find resources about diabetes management from a lifestyle perspective, and connect with others. Our resources cover major topics like food and diet, exercise, and mental health. It’s a platform that breaks the stereotypes and addresses the stigma of living with type 2 by using the collective voices of our community.
The responses from our community have been phenomenal, and I get messages all the time from people who are happy they’ve found our site. Having just one person say that, being able to help just one person, is enough for me. I’m part of this huge type 2 family, and bigger diabetes family. It feels like I’m not alone, and there’s a community where I can be vulnerable and share real-life stories about diabetes. We don’t have to be ashamed about our experiences or struggles; it’s cathartic.
How do you go about doing your job of welcoming and interfacing with community members?
One of the first things is that I recognize that anyone who’s sharing their story doesn't have to. I recognize what a privilege and honor it is to have someone who wants to confide in me and is willing to share their experiences. That’s something you can’t take for granted. Another thing that I think helps people come out of the woodwork is to ask people real questions, where they can feel like someone identifies with them. That may be asking them about their favorite outdoor activities or how they’re dealing with the mental health aspects or misconceptions about diabetes. It’s important to make sure people feel safe and comfortable.
A lot of our engagement comes from Instagram, and the great thing about Instagram Stories is that you can share responses where people can submit anonymously. That may lead to behind-the-scenes conversations that eventually encourage people to share even more with us.
We talk to members of our community as the whole, multi-dimensional people that they are -- beyond diabetes and from a human perspective on how they live their lives. It’s about talking to them in ways I’d want someone in my position to approach me. Yes, I live with diabetes, but that’s not my identity; people with diabetes are more than their disease. It may sound cliché, but talking to people as if they’re more than just a “diabetic” is the key. I’m not sure it gets more simple than that. Everyone’s experiences are different and you have to respect it and empathize with them. Empathy and compassion go along way, and are needed in the type 2 community.
Your own diabetes journey has taken some twists and turns, no?
Indeed. Since my type 2 diagnosis in 2017, I’ve been pricking my fingers several times a day, injecting long-acting insulin twice a day, and taking metformin each day. I exercised and kept a balanced diet, and for a while things were working. My A1C went down and I felt proud I’d done something “right” at managing my diabetes. My doctor was certain we could reduce the amount of insulin I injected. But that never happened and the opposite occurred In late 2018, my doctor told me my A1C had gone back up and increased my medication dosages.
Then came a time in late March 2019 that I started feeling dizzy, almost drunk, and recognized the signs of high blood sugar. I tested and it was in the 400s – the closest I’d ever been to my original diagnosis number – and I also had small ketones, something that is rare for people with type 2 diabetes. I couldn’t pinpoint the cause and only had long-acting insulin to bring it down slowly, but I knew something was wrong and got in to see my endo a few days later. It never occurred to me that I might have LADA, but the test results came in last month in April from my endo along with a note welcoming me to the “Type 1 Club.” This revealed that I was misdiagnosed with type 2 diabetes.
That must have been very confusing...
I’m still trying to figure out where I fit exactly into the diabetes community… I don’t have a definite answer as I’m still processing all of this. But I do think my experiences with T2 over the past couple years are still very fresh in my mind and very valid, so I feel very connected there. Besides, we’re all one diabetes community. It just kind of rocks your world when you find out that you were initially misdiagnosed.
Last not least, what would you say to people with diabetes who may feel alone?
I would say reach out to someone who makes you feel emotionally and mentally safe. Seek solace in groups and chats on social media. I also recommend reading our collection of Type 2 stories on our website and our submissions to our #BeyondPowerful on our Instagram page; you may find some of these stories relatable to your experience.
It’s amazing to see how people live with and deal with their own diagnosis and life with any type of diabetes. We all have different perspectives, and it’s about connecting people in the community and building a safe space for us to thrive. Whether it’s at Beyond Type 2 or online in general, the diabetes online community is an inspiring place to be a part of. It’s great to see how supportive people can be of each other, and make a positive impact on other people’s lives.
Thanks for sharing, T'ara! We appreciate what you're doing and look forward to seeing Beyond Type 2 grow. And Friends, you can read more about Tara's work here and more on her recent LADA diagnosis here.