How Coming Out Helped Me Accept My Type 1 Diabetes Diagnosis

This content originally appeared on Beyond Type 1. Republished with permission.

By Peter Friedfeld

I’d like to tell you a bit about my journey. First, you have to understand something about me: as a lifelong hypochondriac, I always only ‘thought’ I got diseases. So imagine my surprise being diagnosed as a diabetic not once, but twice. The first time was in 2014, right after my 55th birthday when I was diagnosed as type 2. Then two years later in 2016 ­­I was re-diagnosed as a type 1.

I’ll never forget sitting in the office of my new Endocrinologist when he leaned over his desk and said thos­e words that I feared. “You are a type 1 diabetic.”

As he pulled out two boxes he said:

“You inject yourself with this every morning, and you inject yourself with this at every meal.”

I asked “For how long?”, thinking he’d say for a week, a month… And he looked at me straight and said …“for the rest your life!” That’s when the gravity of being type 1 began to sink in.

What I eventually came to understand is that taking my daily shots would be the easiest part of managing this disease.

My New Normal

I was scared to be alone in the early days, and not sure if I would wake up in the morning. After two years of finger pricks, I finally started to use technology (reluctantly) to help manage my Blood Glucose numbers. I remember my first night wearing my Dexcom sensor —which would wake me up if I went low overnight. I explained to my husband Patrick that we were in this together, and explained how when a sensor goes off I may need his help, especially if I’m experiencing a low, scared that I would sleep thru my alarm. Sure enough, that first night, my sensor went off and I hear Patrick wake up and say “ALEXA OFF!” and go back to sleep.

But in all seriousness, my husband has been incredible, and he is just one of the many people whose support has helped me successfully manage living with type 1 diabetes.

I struggled those first few weeks after diagnosis. I would go out with friends, unable to tell them the truth about my diagnosis, and hiding the fact that I was taking insulin. I felt isolated, alone, scared. I felt I had no future, no ‘normal’ life ahead of me. But these feelings were somewhat familiar, reminding me of a time, 35 years earlier, when I was struggling to come out as a gay kid.

This feeling of isolation —that once I ‘disclose’ who I am I will forever be ‘branded’ by others. I didn’t want to be thought of as type 1, just as I didn’t want to be thought of as Gay. But coming out back in the 80s taught me some powerful lessons that I would use on my diabetic journey.

Learning From the Past Life Challenges

I left the sheltered and at times suffocating world I grew up in on Long Island and moved to NYC in 1987, to what was then the heartbeat of gay NYC, at the intersection of Christopher and Bleecker Street. Coming out gay was a real struggle for me, much of which had to do with my own insecurities and hiding who I was for years. The secrecy had taken its toll. I knew I needed to reach out to find other people ‘just like me’. Finding my community created the instant connection that crossed all barriers, and a sense of belonging and acceptance was more than comforting, it was empowering. I had no idea at the time that this process of ‘finding community’ would provide the building blocks that would get me through a life altering diagnosis to come decades later.

Diagnosis

Image source: Beyond Type 1

The 80s were a unique time in the struggle for LGBT rights (Q was not part of the acronym then). It was before the internet, before Instagram and Facebook, which meant finding others would be easier in the big city then it was back in the suburbs–all IRL-in real life. We found a collective strength in ‘community’ that we had to build from the ground up. It was a time when gay culture and awareness was just beginning to evolve in a more public way. I was also living in ground zero of the AIDS crisis in America—where our community literally had to fight for our lives. As our friends and loved ones died, we shifted our community from connection to action. And it was in those very dark days, I understood there was strength in numbers, that organizing began on the streets and there was power in the ballot box. We could change the world by being open with who we are, by educating our friends and family, to engage and not isolate. In the process, I learned how to be an Advocate – and that I could help raise awareness only by becoming visible first.

Ultimately, through my connection with others and in finding my own voice, I learned to be proud of myself and comfortable in my own skin. I learned as a gay young adult, the only limitation I had was myself. It took me a while, and so many were part of that journey.

25 years later, being faced with a new challenge of my type 1 diabetes (T1D) diagnosis—I drew on the strength of the lessons I learned, and eventually it became clear to me that I would need to come out once again. I knew I needed to find my T1D community, and embrace being a type 1 diabetic.

Finding myself again

Diabetes is often referred to as an invisible disease. I hear, “…but you don’t look sick”, just like I heard, “but you don’t look gay”.

I started searching online — I guess where everything starts today. I found an amazing resource in Beyond Type 1, an online community over a million strong. I read an article about Yoga and type 1, written by a type 1 health Coach Lauren Bongiorno. Lauren helped me understand that I can live a happy and healthy life, and helped me take control of managing my disease.

Lauren connected me to Erik Douds, a global adventurer who was biking and hiking around the world. I realized if Erik was able to bike 3000 miles across America, (with only two weeks of training I might add) – I should be able to manage to Bike around the Hamptons.

Both Erik and Lauren taught me how important it is to be able to take care of myself—and to have the confidence to be able to do that. And they both had my back. They opened my eyes to the power of this community. A community that has since connected me to so many — Susan, Rob, Jillian, Eoin, Austin, Jesee, Sarah, Qiana, Mia, Luke, Danielle, Matt, Bill, Alison, Thom, Dom, Peggy, Sara, Annalisa, Rachel, Raquel, Evan, Nate, David, Gerry, Arron and so many more. Proud T1Ds and allies.

Once again, it was thru this community that I learned as a type 1 diabetic, the only limitation I had… was myself.

When it comes to advocacy and education today, I lean on those early years coming out as a gay kid. Only by being visible can I affect the change I seek. I am passionate about talking to others about having type 1 diabetes, injecting in public, proudly wearing my Dexcom and identifying myself as a T1D (Yes I have the Rob Howe Diabetic Hoodie).  I love connecting, learning, and sharing—and being part of a community that is stronger than any individual voice.

Diagnosis

Image source: Beyond Type 1

I now recognize that we need allies in our fight as T1Ds, and that our numbers are too small to move the needle ourselves. We need our voices to be heard, and that requires our non-T1D friends, family and work associates to help amplify our voices as a community in need—of acceptance, of understanding, of healthcare for all, and for the cure we deserve.

My Story Is Only One Story

Today, 1.25 million people in America are living with type 1 diabetes, and every day an additional 100 people are diagnosed —at least 40,000 people per year —it’s a staggering number of lives that are changed forever. 

For so many, our lives are filled with frustration, burden and struggle. We need insulin every day just to stay alive. Insulin is a life-sustaining drug, but it is not a cure. We need a cure. And until that day comes, we need to help each other live the best life possible. It is our responsibility, to ourselves and to the community we created and are part of.

As for my husband Patrick—when we exchanged our vows, we said “for better or worse”. Well, my goal is to somehow make this experience part of the ‘better’. His support since day one has been unconditional. He lives each day as the life of a type 1 partner—watching over me, working with me, making sure I am safe and loved.

Finally, I recall asking my doctor a question that many of us asked when we’re faced with a chronic illness or life-changing disease “why me?” My doctor said, “Peter, it’s just your thing.”

At that moment, I thought I was alone and isolated in my battle with my new LADA diagnosis. But the reality was once I learned to open myself up to others and to embrace community— a lesson I learned so many years earlier, it was no longer ‘my thing’.  Today, 6 years into my new life, I  choose to make it a positive experience: to support those who struggle, to be supported, to learn, to help create and foster community, and to do all I can to help find a cure.

Source: diabetesdaily.com

Feeling Helpless? Here’s What You Can Do

This content originally appeared on Beyond Type 1. Republished with permission.

By Beyond Type 1 Editorial Team

Feeling helpless in the midst of COVID-19? You’re not alone. There’s a lot we still don’t know about the virus and the situation is changing by the hour. One important thing to think about is separating what you can do from the things you cannot control. We’ve compiled a list of specific actions you can take to have a real positive impact for yourself, your family, and your community.

People with diabetes may be at higher risk should they contract COVID-19, so please take all of the personal precautions you need to at this time. Not everyone’s risk is the same, so be mindful of yourself and others. Take what works for you from this list and leave the rest.

Take Basic Precautions

Wash your hands often for a minimum of 20 seconds with soap and water. Practice social distancing, limiting travel, working from home, and rethink big events – these precautions are not solely for you but for those around you who may be susceptible.

Stay up-to-date with your local health department about COVID-19 in your area.

Connect With Family

Stay in touch with friends and family virtually. Up the frequency that you communicate, and be clear about how you’d like to stay in touch. FaceTime or video chatting can be an awesome tool to feel close to those who are far away – without adding any risk for you or your loved one. Other ideas for staying in touch: start a family or friend group text, find games you can play together remotely, or set a regularly scheduled phone call.

Talk to the children in your life about what’s going on. Tell them we’re washing our hands and keeping to ourselves to protect ourselves and others to help them understand that this is about all of us, not just one of us. Ask if they have any questions and explain as best you can. For older kids and adolescents, asking “what are your friends saying about the coronavirus?” might be a good jumping-off point for starting a conversation to help clear up any misinformation.

Make a list of projects for children to help you with around the house, and teach them how to cook with your extra time at home – you’d be amazed at what they want to help with and how good they will feel knowing they are contributing.

Reach out to People Who Are Most Vulnerable

Think about the people you know, and be mindful of how the current situation might be impacting their specific circumstances. Elderly neighbors, grandparents, older relatives, friends with health conditions, anyone going through chemotherapy or the many, many, other circumstances that might contribute to the current level of anxiety. Reach out and ask how they are. Offer to listen or lend a hand — helping with simple tasks like grocery shopping and limiting the time they spend in public could make a huge difference. If you’re limiting your time in public, too, even just lending an ear at this time can help keep anxiety and loneliness at bay.

Don’t tolerate or perpetuate racism, particularly towards those of Asian or Chinese descent. Referring to COVID-19 as the “Wuhan” or “Chinese” virus may perpetuate racism and xenophobia. If you hear or read others referring to COVID-19 using those terms, please correct them. The importance and impact of being kind to one another cannot be overlooked.

Support Your Local Community

Follow local public health departments and support local news. Journalists everywhere are working hard to keep the public informed about this rapidly-evolving situation. Now is a great time to purchase a subscription to your local news source if it is in your budget. Please also think about the sources of information you read, and try to verify their trustworthiness before you repeat it – the CDC and WHO are good for receiving global updates you can trust.

Donate to your local food bank (find one here). Donating money might be more helpful than donating goods, as food banks often get their items at wholesale cost (in many cases, a $1 donation is equivalent to 5 meals). If you’re well, experiencing no symptoms, and have low risk, ask what volunteer opportunities are available to assist with food distribution.

Support local businesses. If you are fortunate to have uninterrupted income during this time (i.e. can do their jobs from home) and have it to spare, consider transitioning purchases from chains to local businesses, buying groceries from local stores rather than large online retailers.

Consider purchasing gift cards now for use later at a gift store, book store, or local restaurant. Call and ask what they need, or if they’ll accept the transaction over the phone. Ask if they deliver or ship.

If you’re out and about, tip your waiters and waitresses, Uber and taxi drivers, stylists, barbers, and other service industry workers as generously as you can afford. 

Offer support in other creative ways, like buying yourself or others a gift card online to use later, and shopping local businesses online if they have the capability. Reach out and ask what support these businesses need that you might be able to offer (i.e. even just sharing online about what they do).

Support the Diabetes Community

Help drive research + innovation. Sign up for the T1D Exchange Registry, a research study that pulls from your personal experiences and data to help accelerate the development of new treatments. Previous T1D Exchange research efforts have led to things like insurance coverage for test strips and changes in guidelines for A1C goals – your input has the power to make a difference.

Donate your data + impact others. Join the Tidepool Big Data Donation Project, helping further the reach of our collective knowledge about diabetes. Your data gets anonymized and Tidepool will also give back 10% of proceeds to the nonprofit organization(s) of your choice.

Share your voice. Talk to your network about the importance of social distancing and other steps you’re taking to minimize contact and stop the spread of this virus.

Connect with the Beyond Type 1 Community. Download the the Beyond Type 1 App and chat with others living with diabetes. We need connection with others now more than ever.

If You’re Facing Challenges Around Work + Income

If your work hours were cut, file an unemployment claim.

Contact your creditors, electric, phone, and cable companies to see if any accommodations or payment arrangements can be made to make up for lost hours or pay shortages at work.

Worried about homelessness or evictions? Reach out to organizations dedicated to fighting homelessness and their plans to deal with the pandemic. Also, stay informed on if your city’s policies on halting evictions due to COVID-19.

What You Can Do to Support Mental Health

Look into telehealth options for mental and physical care. Check your insurance to see if there is a telehealth service offered, contact your doctor to find out if they have an option for remote visits, or check out services like DoctorOnDemandBetterHelp, or TalkSpace.

Find a new daily routine. Keep getting up early, making coffee, eating breakfast, getting ready for the day and choosing a space to work. Going about your day to day as regularly as you can will only do you and your family good.

Volunteer with animals. Dogs and cats appear to not be susceptible to the virus*, so if you are able to walk dogs at your local shelter or visit the cats, consider it. Animals can help reduce stress, and you might even end up with a new friend to take home.

*the virus may be able to survive on the animal if it has been touched by an infected individual, so know the risks here 

Volunteer your time remotely to help others experiencing distress. You can take the training to become a Crisis Counselor with Crisis Text Line from home, and work to support those in crisis.

Source: diabetesdaily.com

Life With Type 1 Diabetes: A Gamer’s Take

This content originally appeared on Beyond Type 1. Republished with permission.

By DJ Lipscomb

I never thought I would be the type of person who watched someone play video games on the internet. But here I am, a 32-year-old dad who loves video games and not only watches other people stream, but recently started a streaming page + podcast dedicated to video games. Oh yeah, and did I mention I also have type 1 diabetes?

The Name of the Game

I was diagnosed with type 1 at the age of ten and it completely changed my life. It required me to grow up a lot faster than I would have liked and has shaped so many decisions I have made over the last 22 years. I remember being so terrified to do basic things on my own as a kid, even thinking that I might die. As a parent to three minions of my own now, I would never wish that feeling on any of them. That type of mentality is not easily shaken, but I eventually was able to push through the fear and not allow this illness to keep me from being everything I wanted to be.

Lipscomb

Image source: Beyond Type 1

The funny thing about growing up fast is that you leave a lot of “kid” stuff behind. I played video games a lot as a young kid. My brother and I would spend hours playing Gameboy or Super Nintendo. Looking back, I can see now how my diagnosis shifted my mentality on what I thought was age-appropriate. I just didn’t feel like a kid anymore. I had new responsibilities that had life-threatening consequences if ignored. Sure, I still played games, but I lost that pure innocence and fun that comes along with jumping into a brand new world for the first time because I was obsessed with keeping my blood sugar in check.

After going through some major life changes in 2016, I suddenly found myself faced with an opportunity to take stock of who I was and who I wanted to be. My diabetes had suffered immensely as a result of the stress from a divorce, I was out of shape, and I was a little lost. I remember one of the first things that I did for myself during that transition was buy a Nintendo Switch. I will never forget the moment I hooked the Switch up and played The Legend of Zelda: Breath of the Wild for the first time. That joy I had forgotten suddenly rushed back through my veins. I knew at that moment, gaming would forever be a part of my story.

Fast forward to today. I am the healthiest I have ever been thanks to a major shift in my diet and to a recently introduced workout regimen. I own a successful consulting and media company called Exhale Creative that helps brands determine what type of content they need to create in order to help them grow and better reach their audience. We also produce 99% of the content for those clients. I have been a hired guitar player, touring all over the world and playing in front of tens of thousands of people (that’s a whole other glucose management article on its own). And now, I am chasing down a new dream called Patch Notes.

How to Stream

Patch Notes was created to celebrate the intersection of life and video games. We want to show how video gaming can bring out the best in people while simultaneously breaking down stereotypes about who or what a gamer is. We stream on Facebook Gaming, and you can find our podcast on iTunes and Spotify.

When Facebook announced that on Giving Tuesday they would match dollar for dollar the money raised through charity streams, I was thrilled to raise some funds for Beyond Type 1. I have had the privilege of interacting with several members of the Beyond Type 1 team and truly love the light they shine on all things diabetes. And even though I did not raise an abundant amount of money during our stream, my growing community did step up and donate while we hung out and played Pokemon Shield.

My platform is growing and I can’t think of a better way to use it than to help people, who like me, face this illness every day. It is also worth noting that there are several type 1 diabetes people (T1Ds) who watch the stream, which has made it feel even more meaningful to me. I am excited to host more streams that bring awareness to a disease that is often misunderstood or misrepresented, and look forward to bringing in more donations to help others with diabetes pursue their passions.

You can go back and watch the stream (and still donate) here. And come hang with us anytime at Patch Notes.

Source: diabetesdaily.com

Este Haim on Burnout + Bolusing for Pizza

This content originally appeared on Beyond Type 1. Republished with permission.

By Todd Boudreaux

Este Haim is the bassist of the pop group Haim, which she formed with her sisters Alana and Danielle in 2007. Este has also been living with type 1 diabetes for nearly 20 years. Last week, Haim announced the release of their new track “Hallelujah,” stating the song is for “anyone struggling with chronic illness.” Beyond Type 1 caught up with Este to ask about the genesis of the track, her life on the road with T1D, and how she faces diabetes burnout with the help of her support system.

A Rough Transition

Freshman year of high school is perhaps the biggest transition in any teenager’s life. For Este Haim, that transition was made all the more difficult by her diagnosis with type 1 diabetes at age 14. Este recalls how difficult it was to fit in given all that she was going through.

“Yeah, it wasn’t a great way to start my first week of high school… I was basically a social pariah for a very long time. You know, I was just the diabetic kid in school that passes out and no one knows why and the diabetic girl that smelled like orange juice all the time.”

Although some of her classmates made life difficult in high school, there are two people Este has always been able to depend on — her sisters Alana and Danielle.

“Not only are they my sisters, I’m also in business with them, so we spend so much time together. We’re on the road together 24 hours a day for weeks on end. So they’ve seen every version of me. They’ve seen me in a good place with diabetes, and in a sh*tty place with diabetes,” Este says.

“I’m lucky that I have Danielle and Alana to be my support and when I am having a bad day, a bad week, a bad month, they’re always the first people to be like, ‘Dude we got you. Whatever you need. We’re going to get through this. Let’s get you a healthy meal. Let’s not have pizza after the show tonight. Let’s go get you something good so that you don’t wake up and your blood sugar is 350.”

Real Talk

“Pizza is such a blessing but it’s also such a curse” — Este’s description of pizza is all too real for anyone who has lived with diabetes.

“After a show, I get so hungry and the only thing that’s available to me is pizza. And we all know that pizza does weird sh*t to blood sugar. It’s this unexplained thing — bread I can bolus for, tomato sauce I can bolus for, cheese I can bolus for, but for some reason when they’re all together it’s this magical thing that I can never get right. It’s insane, what is that? It’s like my favorite food. And of course, it’s the one thing that I really can never get right. It’s hard being on the road and craving food and realizing the only things that are open late are either diners that don’t really have a lot of like salad-y options, or pizza.”

Este’s sisters fully grasp the exhaustion that comes with living with diabetes and have become an amazing support system for her. Their holistic view serves to remind Este that she is more than her diagnosis.

“My sisters have this incredible attitude of, ‘If you’re going to have a bad day, have a bad day, and just live your goddamn life. Tomorrow’s a new day, you get back on the wagon, get back on taking better care of yourself, let’s make some healthier choices. Let’s take a walk around the venue for a little bit, let’s get some exercise.’ And that also takes energy on their part. So I’m thankful that I have them on the road and it’s definitely an integral part of diabetes, is having that support. I’m really lucky.”

Life on the Road

Haim

Image source: Beyond Type 1

Keeping track of blood sugars on a consistent schedule is extremely difficult, and the ups and downs of life on the road can wreak havoc on the ability to maintain glycemic control, of which Este is all too aware.

“It’s being in a different time zone and not being able to sleep and then the stress of that and the cortisol in my blood making my blood sugar rise for no reason. Often, I won’t even know that I’m stressed out, and then I’ll see on my Dexcom that the arrow just goes straight up.”

Having a continuous glucose monitor (CGM) has been a game-changer for Este, not just because it allows her sisters to follow her glucose levels remotely, but also because of what it means to others living with T1D.

“I think awareness is so important and that’s why I wear my Dexcom on my arm now because I have a way of showing people that I am a type 1 diabetic… before I didn’t really have that.”

Diabetes Burnout

Este doesn’t mince words when it comes to the importance of mental health awareness for people living with type 1 diabetes. She is candid about the very real struggles that anyone living with a chronic illness endures over the course of their life.

“I think something that I struggled with, something a lot of people with diabetes struggle with, is perfection. We were taught to look at high blood sugars as a failure. I think that leads to diabetes burnout because you’re constantly trying to be perfect. Mentally, there’s only so much of that you can take without feeling like a failure… And I think that’s been the majority of the reason that I burn out. I’m just like ‘F*ck it, fine, whatever.’”

Haim recently released a new song titled ‘Hallelujah’ and Este posted that her verse in the song was inspired by her struggles living with T1D, specifically calling out the phenomenon of diabetes burnout in her post.

“It’s a lot easier sometimes to just ignore it and not deal with it, but we all know it always catches up with you… I feel like I’ve gone through diabetes burnout — for long periods of time — at least 10 different times in the past 20 years of being a diabetic, and like it’s tough, man. It’s tough to maintain that as a type 1 with chronic illness because there isn’t necessarily a promise that there’s a light at the end of the tunnel, and I said it in my post, it’s like a 24-hour job you can’t clock out of, that you don’t get paid for. Maintaining that mental toughness I think is exhausting for a lot of people.”

Haim

Image source: Beyond Type 1

Looking to the Future

At the end of the day, it all comes back to the support we receive from the people around us. As our discussion wrapped, Este told Beyond Type 1 how important it is to remind those that support us just how appreciated they are.

“The thing that I want to impart to people is to tell our loved ones that support us — that we do appreciate them — and to thank them for being supportive because I don’t know what I would do without my sisters, my parents, my best friends and my boyfriend for that matter… I think it’s really important to find the people that truly love and support you. I know it sounds trite and cliché, but all we can do is look to the future and try and live our best lives and have fun doing it. Enjoy every day as much as you possibly can, and don’t let diabetes get in the way of you doing and achieving everything that you want to do. Truly, that’s all we really can do.”

Source: diabetesdaily.com

From Dance to “American Ninja Warrior”: Talking to Christina Martin

This content originally appeared on Beyond Type 1. Republished with permission.Christina Martin has had type 1 diabetes since she was 13 years old. In high school, she started her own foundation – Type Zero – to help others know they were not alone. This year, Christina attended the JDRF Children’s Congress and participated in Season […]
Source: diabetesdaily.com

Tested: Book to Inspire People With Type 1 Diabetes into Action

Tim Hoy, an author of several books, has written a book for people with diabetes called Tested. He was diagnosed in 1976 and has lived with type 1 diabetes for 43 years. Tim grew up in a small rural community in New Zealand and in his own words has “gone on to enjoy an amazing […]
Source: diabetesdaily.com

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