diaTribe interview – 3 tips for sharing your story

I recently connected with Cherise to kick off a new series at diaTribe called Community Dialogue to talk about why I started sharing my story. 

It’s always a blast catching up with Cherise, and I’m honored for the opportunity to answer a few questions about sharing my story. 

Transcript

Cherise Shockley:
Hi everyone. My name is Cherise Shockley, and I am the Community Manager over at The diaTribe Foundation. And I am so excited to have Scott Johnson, which is, he’s like a beacon of light. He loves basketball, like loves basketball, and he’s from Minnesota, and he now lives in San Diego. Hey Scott, thank you so much for joining us.

Scott Johnson:
Hi Cherise. Thanks for having me, really, really excited and honored to be here with you. Thank you.

Cherise Shockley:
To introduce you to those who may not know you. So, with that being said, what is your connection to diabetes?

Scott Johnson:
So, I have lived with diabetes for 41 years. I celebrated my 41st diaversary in April. I was diagnosed as a small boy when I was five years old.

Cherise Shockley:
What prompted you to start writing about your journey with diabetes?

Scott Johnson:
Yeah. I started writing about my journey with diabetes because, as I entered adulthood and started raising a family, I was really struggling to cope with my diabetes. Along with therapy, I found it helpful to write about what I was going through. There was just something really powerful for me about exploring the messy thoughts and feelings I was experiencing, through writing. And that helped a lot.

Cherise Shockley:
What did you learn about yourself, or what did you find that you didn’t know?

Scott Johnson:
Yeah, I think what I learned the most is that diabetes is messy and that it’s normal for diabetes to be messy. And that the emotional side of diabetes is just as real, and as important, as the medical side. And that the emotional side of diabetes is messy too. And that’s also normal. But maybe most importantly-

Cherise Shockley:
Messy?

Scott Johnson:
Everything with diabetes is just messy. And I was going to say that maybe that’s just me, but I think the most important thing that I found, is that I wasn’t alone in experiencing that messiness with diabetes, in every aspect of it.

Cherise Shockley:
And you write openly about mental health and diabetes. What was your thought process to say, this is what I need to share, instead of hiding and concealing that part of your journey with diabetes?

Scott Johnson:
I think it really was, just for me, a natural part of my story. And I think that as I explored that emotional part of my diabetes, it was always there and came along for the ride. And I think that it’s always been important to share all sides of life with diabetes, right. Not just the positives, and the wins, and successes, but also the struggles. And for me, most of those struggles were with the mental health and emotional wellbeing sides of diabetes. And so, talking about that was important.

Cherise Shockley:
And how did the community respond to having you share your mental health struggles, along with diabetes, and how that plays a part in management?

Scott Johnson:
Yeah, that’s a great question. I think the biggest response was people sharing similar experiences. So they helped me know that I wasn’t strange or more broken by experiencing those, but that it was normal to feel these things. It was a normal part of diabetes. And that made a world of difference to me. Additionally, they shared ways that they coped with those struggles and problems and helped me see a lot of these things from different perspectives. And that has been a really valuable part of participating in the diabetes online community, seeing solutions or seeing problems from other perspectives.

Cherise Shockley:
What would you say is the hardest thing about being open about your journey with diabetes?

Scott Johnson:
Open up your life to the world of the internet, right? There’s a lot of judgment that you face. Because I’ve opened up a window of my life to the world, people jump to conclusions, maybe make a lot of assumptions. But in reality, there’s a lot of context that they don’t know. And so, there’s more than your fair share of criticism, or unfair judgment that’s made, when people just simply don’t have the full story. Or don’t take the time to think about, or ask questions about what you’re saying, or trying to say.

Scott Johnson:
Three tips that I have for people who want to share, but don’t know where or how to start are, number one, follow your heart, you don’t have to do what everyone else is doing. Do what feels right for you, and whatever satisfies that urge that has you wanting to share in the first place. It’s a really big world out there. And there are plenty of people who need your unique story and perspective.

Scott Johnson:
Number two, you are in control. Sharing about your life with diabetes should never, ever become another source of stress in your life. There are too many of those already. You make the rules, you’re in control. You should get value from your sharing. If you’re feeling stress, something’s off, something’s not right. And it’s time to maybe take a step back and reevaluate what’s going on, why you’re doing what you’re doing, and maybe shift gears a little bit. And then number three is, just start. Start anywhere. It’ll never be perfect. And that’s fine. If you’re feeling a call to add your voice to the mix, there’s a reason for that. So just start. Someone out there needs your voice. I think that’s important.

Cherise Shockley:
Okay. Well, on that note, if you could have a conversation with anyone about diabetes, who would it be?

Scott Johnson:
That’s another really great, great question. I would love to spend a bunch of time talking with my childhood endocrinologist. His name is Dr. Larson. Dr. Robert Larson, and he’s still around. I actually bumped into him again, I don’t know, it must’ve been five years ago, or so (it was 10). And it was really a great opportunity to thank him for taking such good care of me as I grew up. He’s running some camps out of the, I believe the Mankato area of Minnesota (Camp Sweet Life) and was still practicing (when I saw him back then). But I would love to just share some time visiting with Dr. Larson, catch up.

Cherise Shockley:
Well, thank you so much for spending time with us, to share this out. And everybody, if you want to check out Scott, you can look up Scottsdiabetes.com and also check him out at diatribe.org. Thank you so much. Until next time, Scott, be safe.

 

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Scott K. Johnson

Patient voice, speaker, writer, advocate. Living life with diabetes and telling my story. Patient Success Manager, USA for mySugr (All opinions expressed are my own and do not necessarily represent the position of my employer).

Diagnosed in April of 1980, I recognize the incredible mental struggle of living with diabetes. Read more…