Top Ten Myths About Peer Programs

I have been living with type 1 diabetes for almost 30 years (this October 19th marks my 30th diaversary) and I’ve worked in the diabetes industry for over 20 years. I’ve primarily focused my career on community education and peer programs and have seen time and time again how beneficial they are. But I’ve also heard, for a variety of reasons, that many are reluctant to take part in a community or join a group. And we think it might be due to some misconceptions or myths about peer programs. Here’s our list of the top ten myths about peer mentorship!

Myth #1: My healthcare team is the most important part of my diabetes management. 

YOU are the most essential part of your diabetes management. You manage your diabetes for 525,600 minutes per year. While your healthcare team is vital, research suggests that a peer community is just as important as an educated healthcare team.

Fisher et al. conducted a systematic review that analyzed data from peer support for diabetes management studies and concluded that,

“across diverse settings, including under-resourced countries and health care systems, PS [peer support] is effective in improving complex health behaviors in disease prevention and management including in diabetes.” 1

If you visit your diabetes healthcare provider (HCP) once per month for 20 mins, that’s only 240 minutes per year. Yah, it’s all you. Give yourself a high five – this is hard work! Regardless of the type of program, a peer community can help you in so many different ways. Emotional support, stress relief, guidance, learn to advocate for yourself, exposure to various management tools, techniques, devices, and medications, and the list goes on! Being around like-minded people going through the same thing – just.makes.sense.

Myth #2: I don’t need it – my diabetes is well managed. 

That’s awesome and we’re excited to hear that! Over the years, I’ve often heard the comment, “I didn’t know I needed it until I was there.” A peer program, whether that be an event or group, can fill a gap you didn’t know existed.

We can learn things from our peers that we just can’t from our team of doctors and nurses. For example, you might not be aware of specific tips and tricks that people with diabetes use concerning their devices, medications, insurance plans, or assistance programs. Peer groups can also help us fine-tune our diabetes management in different ways than our healthcare teams can. They are there when the going gets tough, and you need someone who “gets it.”

A good friend of mine, doing well and happily managing his diabetes, had no desire to use CGM (continuous glucose monitoring) technology. He attended an event and saw his friends using one and realized he could fine-tune things even more. It was because he saw others using it and was able to speak to them about their experiences; he decided to give one a try. Six years later, he’s still using one and doing better than ever.

Myth #3: I only need a peer community or mentor when first diagnosed.

Having someone walk you through what to expect or be there with you as learn can be impactful. But diabetes is lifelong, and that means it can change over time. Life ebbs and flows, and so can our management and ability to focus on it. Having people who “get it” and you can turn to can be beneficial at any stage!

Myth #4: A peer program is all about complaining. I don’t want to be part of a pity fest. 

We hope not! I know in my peer group I can post funny anecdotes (those things that only people living with diabetes would get a laugh out of), ask questions, figure out what to make for dinner, but yes, also vent if I need to.

The way I’ve managed my diabetes has changed over time throughout my life, and my peer group has been so helpful and empowering along the way. We hope our peer mentorship program will be a source of positive relationships and interactions.

Myth #5: My diabetes will be reversed if I join a mentorship program.

We wish this were always true. According to a small study 3, people diagnosed less than four years ago with type 2 diabetes found that drastic calorie reduction normalized blood glucose and insulin resistance. Thus, stopping diabetes in its tracks. However, this study did not include anyone using medication and had strict exclusion criteria. Therefore this result may not be true for everyone. Alongside lifestyle changes (nutrition, exercise, sleep, and stress reduction), sometimes medication is needed to help the body work more effectively and efficiently. Joining a program or group can help you find the resources and support you need to make those necessary changes and stay the course.

Myth #6: I will be shamed or judged for my choices or medications I’m using or not using.

We’re sorry to hear if that’s the experience you’ve had previously! For many communities and programs (including Facebook groups), most have guidelines each person must adhere to in order to participate. In our forum, there are Community Guidelines (rules for posting). Our Peer Mentorship Program encourages empowering language and not “shoulding” each other (“You should or shouldn’t do this.”) Instead, we speak from our own experiences, what has and has not worked. Each person is on their journey, and it takes time to reach your goals. What works for one person doesn’t necessarily mean it will work for you (diabetes would be SO much easier if we could all do the exact same thing and get the same results!) Most times, you’ll need to experiment to find the combination of things that work for you, whatever those things may be. One step forward at a time.

Myth #7: It’s too much time. I don’t want to spend more time talking about diabetes.

via GIPHY

We totally get it! Joining any program involves a time commitment, but what you put in, you get out. We know that talking about our experiences creates a sense of connection and belonging, which can help us cope during difficult times. It can also be more efficient to talk about options and choices with real-life users before starting something new or making changes. Sharing what is going on, asking questions, learning from other’s challenges, and helping others can pay you back in dividends.

Myth #8: These types of programs don’t work.

We hope they do, and research shows they do work! Peer programs are an option or piece of a larger puzzle. It’s one area that can help you manage your diabetes, but you have to show up and participate. Specifically, in the Diabetes Daily peer mentorship program, we ask that you set some goals to work towards them and use the community for help. You create the goals, and they can be as small or grand as you like.

See what our previous program participants had to say:

“I really enjoyed my time chatting with others and seeing how others managed their diabetes. It [the program] gave different perspectives but I always felt very supported. I felt I also helped my mentor with their diabetes.” 

 

“I learned so much from my mentor! He had tons of knowledge and I changed a lot of my lifestyle based on information from my mentor and the group.” 

 

“I learned about diabetes technology that I would have not known about.” 

 

“I was very introverted and not ready to accept my diabetes. This program made me realize how important it is and that I can’t ignore it.” 

Myth #9: All of these programs are the same.

Every program is different and unique. Take Weight Watchers; for example, it previously focused on in-person group weigh-ins and meetings. Now, the program uses an app and online support to help members reach their weight loss goals. Alcoholics Anonymous (AA) is composed of in-person group meetings and a one-on-one sponsor relationship. Cancer support groups often meet in person with a social worker, mental health professional, or facilitator to discuss their experiences, feelings, and emotions. Diabetes Daily has an anonymous online forum where you can freely post your questions and answer other people’s. The re-launch of our mentorship program is more similar to AA, where you have a partner to connect one-on-one with and group sessions where you can learn from others’ experiences and stories.

Myth #10: It’s a diabetes education program.

Yes and no. It’s what we call peer support and peer education. By listening to others’ successes and their challenges, you learn about real-life experiences. For example, it’s invaluable to hear about a medication’s common side effects and address these with your doctor before trying something new. Not everyone will react the same, but we know sharing your tips and tricks can help others. Continuing to work with your healthcare team is vital as they are the ones who will address medications and any changes to those.

To learn more or join our peer mentorship for people living with type 2 diabetes, head to our Mentorship page. Registration closes August 28th, 2020, and the program begins September 1st. We hope you’ll join us!

References

1. Fisher, EB, Boothroyd, RI, Elstad, EA; “Peer support of complex health behaviors in prevention and disease management with special reference to diabetes: systematic reviews” (2017) Clinical Diabetes and Endocrinology DOI: 10.1186/s40842-017-0042-3  Accessed: 8/21/2020 https://clindiabetesendo.biomedcentral.com/articles/10.1186/s40842-017-0042-3  

2. Warshaw H and Edelman D; “Building Bridges Through Collaboration and Consensus: Expanding Awareness and Use of Peer Support and Peer Support Communities Among People With Diabetes, Caregivers, and Health Care Providers” (2018) Journal of Diabetes Science and Technology DOI: 10.1177/1932296818807689 Accessed: 8/21/2020 https://journals.sagepub.com/doi/full/10.1177/1932296818807689#

3. Lim, E.L., Hollingsworth, K.G., Aribisala, B.S. et al. “Reversal of type 2 diabetes: normalisation of beta cell function in association with decreased pancreas and liver triacylglycerol” (2011) Diabetologia 54 DOI: 10.1007/s00125-011-2204-7 Accessed: 8/21/2020  https://link.springer.com/article/10.1007/s00125-011-2204-7#citeas

Source: diabetesdaily.com

Embracing Community in Times of Crisis

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

By Erin McShay

Sometimes in life, it takes something bad to happen for us to pause and appreciate how good things once were. I used to think of our lives as before and after our Sam was diagnosed with type 1 diabetes. Fast forward twelve years: he’s a senior in high school and the Corona virus is sweeping the country. The cacophony of chaos in the world is now pulling our attention into dark territory, channeling voices of fear and uncertainty. It’s almost as if time has slowed down to a crawling pace; giving us the chance to inhale and catch our second wind.

Community

Image source: Beyond Type 1

Always a Battle

Dealing with any chronic illness is an arduous job packed with hundreds of additional decisions to make a day. Ordering supplies, planning and packing become essential, life-saving chores. We take the burden in stride, but then become our harshest critic when thing go wrong. From personal experiences, I’ve learned that dwelling on our missteps serves no one. Remember that Billy Joel song? “We’re only human, we’re supposed to make mistakes.”

Just last year I made a doozy when we sent our two teenagers to Houston to visit family – I forgot to pack additional insulin pump cartridges for our son. Halfway into the trip, Sam called to say he ran out of cartridges. We’ve taken dozens of trips throughout the years, driven and flown across the country, camped in remote areas, and I’ve never forgotten anything. I told him to check again. We went over the list together; extra insulin, needles, blood sugar meter, back up meters, test strips, infusion sets, ketone strips but no cartridges. In a cupboard, I found the sandwich baggie of them that somehow got left behind. Anyone who’s ordered these types of supplies knows that you can’t just walk into a pharmacy to get more; in fact, you only have a few options and they all take twenty-four hours to ship. It didn’t matter how many times my son and husband told me it was okay: two thousand miles away, I spent the entire night consumed with guilt and worry, crying on my husband’s shoulder. Sam spent the night waking up every two hours to do blood sugar checks and give himself shots. He learned a hard lesson and so did I, but meanwhile we still had to find cartridges.

Community

Image source: Beyond Type 1

Somehow, on a hunch and a prayer I managed to look up a Facebook/Beyond Type 1 friend whom I’ve never met – and asked for help. It was a miracle really. I was a complete stranger to her, she could have said, ‘Sorry,’ but instead this angel went to extraordinary measures for us by reaching out to her community to find me the specific cartridges I needed for Sam’s pump. Her son had a different pump, but a friend of her’s (another angel) met Sam and my sister-in-law to give them an exceeding amount, beyond what he needed. I paid her back when I got her address, but at the time I don’t think they knew the depth of my gratitude. Not to mention the many thanks to my sister-in-law for driving Sam to another county, and our family in Houston for taking such good care of him.

When You Need Help, Ask

The chances are in your favor in the type 1 community with a million out-stretched hands, and general well-wishers ready and willing to offer not only advice, but whatever you need to help you get by.

I’m embarrassed to say I ran out of supplies once before the Houston trip. Not long after Sam was diagnosed, we depleted our infusion sets before our new order arrived. Luckily a neighbor, whom I met through a friend, had the same insulin pump as Sam, and gave us a few loaners. Another neighbor, a type 1 diabetes (T1D) dad who lived around the corner from us, went out of his way to offer advice and help us when Sam was first diagnosed. We were so scared in those early years and his helpful words still bring me comfort years later.

Get to Know Your Neighbors

Once, I bonded with a fellow writer at a conference, where I divulged that I had a son with type 1 diabetes. We became fast friends after she told me she had developed late adult onset T1D. One night, when my son’s pump stopped working, I called her in tears. My husband was out of town and I couldn’t get Sam’s pump to prime. She drove over to my house at ten at night – because these problems never happen in the middle of the day – and got the pump working again.

I wouldn’t have known these angels to receive help from them, had I not been as forthcoming about Sam’s disease. Nor would I have met them if I wasn’t on Facebook or involved with my community. You don’t realize these tiny miracles for what they are, until after the fact. If not for their help, I would probably be in a strait-jacket staring at a cement wall somewhere. Instead, I am now willing and able to pay it forward anyway I can.

Sibling

Image source: Beyond Type 1

As a writer and avid reader, I peruse tons of articles and social media sites a day, and if there is one thing I’ve learned, it’s to think before you say or post something. Negativity helps no one. I’ve found that depressing, bleak posts can linger in your psyche long after you’ve read them. Your views can really impact others. On the other hand, knowing how meaningful certain tweets can be, spreading love and encouragement, cannot only change a person’s day but has the power to alter their lives.

One kind word can mean the world to someone. Life is hard, especially with a chronic illness and there is no question diabetes stinks, but what a wonderful support system we have in place within the T1D community! People can be quite beautiful, and they have a wealth of knowledge on a much deeper level sometimes than our medical professionals.

Pay It Forward

I heard once that Jackie Kennedy Onassis said that motherhood was the most important job on earth and if you mess that up, whatever else you do doesn’t matter very much. My son and daughter are edging their way to adulthood now, and I hope that they’ve learned from my mistakes and watched how I forgive myself. I hope they’ve learned from the tiny mercies shown to us, and that when someone’s in need, you offer a helping hand or an encouraging word without blinking. I hope they stand up to injustice when they see it, and become advocates for the less fortunate, like those struggling to afford insulin.

As I reflect in this trying time, I see that through Sam’s diagnosis, we’ve learned and grown so much because of it. It’s made us who we are – all of us. And though this is a flawed, imperfect world, we truly have a family beyond our own. No amount of social distancing can diminish how interconnected we truly are. The silver lining through this all is that we have each other.

Source: diabetesdaily.com

Type 1 Therapist’s Tips for Coping and Grieving During Hard Times

The COVID-19 pandemic has left us all in fear, especially for those who are elderly or have pre-existing conditions. Knowing that we fit this demographic adds an extra layer to this challenging time. It is more important than ever to take care of our mental, emotional, and physical well-being. We spoke to a licensed associate marriage and family therapist, Allison Nimlos, about managing during this difficult period.

Hi Allison, thank you so much for taking the time to talk to me.  I know you are a licensed associate marriage and family therapist and very active within the diabetes online community and do your part to advocate, educate, and support others dealing with this disease.

I follow you on Instagram and have appreciated some of your COVID-19 related posts helping people to deal with our new normal. I thought it would be nice for our readers to hear the perspective of a mental health professional and get some ideas on how we can cope with the situation and keep ourselves sane!

How long have you been living with type 1 diabetes?

97 years. Oh, wait. It just feels that way. I’ve had type 1 diabetes for 26 years.

Photo credit: Allison Nimlos

Did your diagnosis play into your choice of becoming a marriage and family therapist?

Absolutely! Originally, I thought about becoming a nurse or dietitian because I want to become a diabetes educator, but I decided to pursue counseling because I wanted to have the education to help with the mental health toll that I and many others have experienced. I also love the systemic view MFTs [marriage family therapists] take because diabetes affects more than the person with the broken pancreas.

Now I work as both a therapist serving residents of Minnesota with mental health and relational issues, and as a diabetes coach, where I merge my counseling skills with my passion and experience in diabetes education to focus on the three S’s: self-talk, self-care, and sustainable strategies for diabetes management.

When you heard the virus was picking up speed, what were your first thoughts? Fears? How did you prepare for staying at home?

When I received confirmation that supply lines were not going to be disrupted, it definitely quelled a lot of nerves (although I was very happy I could order a 3-month supply of insulin and pump supplies right at the start — it was just lucky timing!). I think my concern was actually with the misinformation around PWDs [people with diabetes] being immunocompromised — we’re not.

A lot of the adjustments have come with evaluating and navigating what changes need to be made, and making decisions around the process of how things get done. I think it’s important to strive for as much normalcy as we can (regular sleep, healthy eating, work/life balance, etc.) because our basic needs need to be met, while remembering that this is not normal, and it’s not going to feel that way.

Photo credit: Allison Nimlos

I know a lot of us are stressed…very stressed. How do you suggest people cope with these emotions? 

I think stress often comes from wanting to control things that are out of our control, so recognizing our power can help. Making a list of things that you are in charge of deciding (how do I want to protect myself when I go out), vs. things that you aren’t in your control (how other people dress) can keep you focused where your attention is most useful.

Many of us try to anticipate what’s going to happen next, and that’s also something that is out of our control. I could spend a lot of time thinking and planning, and then be worried about whether or not I was right, and then spending more time worried that I’m wrong… Or I could just focus on today and this week and making only the decisions that need to be made right now.

Many people have found their blood sugars all over the place amidst the crisis. What do you do to stay on top of your management during this challenging time? 

This is where the mindset and management overlap comes into play! We have to recognize that things are different, and pretending they aren’t is a recipe for disaster. Observe your blood sugar patterns and your lifestyle patterns. What sorts of things are your blood sugars, your energy levels, your mood asking for? What changes can you make to your management to see improvement? When we don’t adapt to our changing needs, it raises our anxiety and stress because we end up battling diabetes using strategies that are no longer sufficient.

For me, I have noticed that my blood sugars are trending much higher lately. It could be less activity, it could be our meals, it could be the low-level but constant stress that I have. Some things I’m working on are changing my insulin settings on my pump, and also making a plan to get some more regular exercise. I’m also making a point to review my Dexcom Clarity regularly to see how those adjustments go.

Many people are staying home. Some are lucky enough to be with family and/or friends; others are doing this all alone. What is your advice to those people who may be feeling very lonely and in despair?

Connection is key. Loneliness, scientifically, really is unhealthy for people. But social distancing does not mean socializing at a distance. People do need to stay home and away from people! Make plans to do things virtually, like attending online meet-ups, calling parents and friends regularly. You’re right, it isn’t the same, and that sucks, but it’s what we have and better than complete cut-off. I encouraged my clients to do an activity with friends and family virtually, such as watching a TV show together or eating a meal together. Making shared memories is a big part of how we feel connected.

Photo credit: Allison Nimlos

On the other hand, many are stuck home with spouses and children for weeks on end and are starting to get a little cranky. What is the best way for families to enjoy this time while respecting each other’s space?

Designated time for solo activities and hobbies, such as reading quietly, putting a movie on for the kids, taking a long shower or bath, or even going outside to a deck or balcony.

I live in New York and haven’t left my house in over three weeks besides to a park to exercise. What are you doing to keep busy, stay active, and keep your spirits lifted?

My 2.5-year old loves to go on walks but hasn’t seemed to notice that we don’t go farther than 2 blocks. We keep a fairly regular schedule with online games, arts and crafts, baking, his toys, reading, watching TV, and thankfully, naptime. I also stay connected with regular virtual meet-ups, including one that I host on Wednesday nights at 8 pm EST.

These are difficult times. Even after the COVID-10 virus dies down, come the warm weather, we will feel the effect of it for years. Many people are losing their jobs and wondering how they will stay afloat. What is your advice on how to stay positive?

Before we can move into positivity and meaning-making, we first have to grieve. It IS okay to be sad and angry and any other emotions you’re feeling. It’s a really big deal that has happened to people, and I don’t think we should feel pressured to feel anything we don’t. They are powerful messengers and need to be listened to, but we also need to make sure they aren’t driving the car the whole time. I try to remember that I have gone through hard times before, and I can get through another. And again, to not try to overpredict how bad or good something is going to be. It’s easy to think “worst-case scenario” — but what if everything works out for the best? We spend very little time sitting in hope.

I might be biased, but I highly recommend finding a therapist to work through the grief, loss, and trauma that comes with an experience like this. We are still available! You can find a therapist in your state (because we can’t practice outside of where we are licensed) by visiting a therapist directory like PsychologyToday.com.

Unfortunately many are dealing with the loss of a loved one due to COVID-19. Dealing with death is hard enough, but during a time like this when you can’t be with your loved one for support how do you recommend people going about mourning? It is a unique time for sure.

How to properly mourn is a question a lot of people in grief ask and it’s one thing most therapists shy away from. There isn’t a process or a procedure, but there are themes and commonalities (hence the 5 stages of grief — which is more of a description for common elements than anything). Anger is going to be a really common emotion right, and that makes sense. Bargaining too. And a bunch of other ones the stages don’t include (because it’s not all-encompassing!). There are no shoulds for grief, no timelines.
But I will say that it is absolutely okay – necessary maybe – to name and feel all the emotions, even the ones we don’t understand and don’t feel we have a right to. People who have lost someone, it’s going to be clear and understood they are grieving. But we have all lost something, our old way of life, and that can also bring up the same feelings of grief, even if not tangibly connected to an individual. However it makes sense to care for your grief is going to be okay right now.

Thank you, Allison, for taking the time to talk to me and for all you do for our community! I hope you and your family stay safe and healthy!

Source: diabetesdaily.com

Diabetes Isn’t “One Size Fits All”

I love the diabetes online community for everything that it offers: advice in times of need, hope in times of despair, helpful anecdotes and inspiring stories, and friendships formed across time zones and many miles.

One of the things that the diabetes online community sometimes does, though, is to try and prescribe how everyone with diabetes should live. One day, it’s the Dr. Bernstein diet, the next, it’s high-carb, low-fat. The Mastering Diabetes (mostly) fruit diet is so popular now that their book has even made the NYTimes Bestsellers list. People are jumping on diet and exercise bandwagons before they figure out what they truly need (and want!) in terms of their diabetes management, and what it should look like, day-to-day.

Parents are often left feeling guilty if they can’t “hack” their child’s insulin pump, and individuals with diabetes feel bad when they don’t (or can’t?) do CrossFit or maintain a super low-carb lifestyle. A once seemingly supportive community now raises an eyebrow if they spot you eyeing over a cookie during a meet-up group, or (god forbid) a sugar-sweetened beverage. But I’m here to say one thing: diabetes isn’t a “one size fits all” disease.

You are not a “bad diabetic” if you don’t have a DIY looping system, or if you don’t want to sit down and try to figure it out. You’re fine just the way you are if MDI or insulin pens work better for you, if you dislike skin adhesives, or feel claustrophobic always having something attached to you.

It’s okay if you spike every morning, without fail, due to dawn phenomenon, and if you don’t ever post your CGM graphs to social media. It’s okay if you don’t have a CGM (really, it’s fine). Or if you don’t take an SGLT2-inhibitor off-label. Or even want to try. There’s no perfect low snack. There’s no perfect meal.

Figure out what your body needs, and honor that. It’s okay if you don’t want to eat low-carb, high-carb, or in-between. Or if you’ve lived with type 1 for 15 years, enjoy your weekly ice cream treat, and don’t want to give it up. Figure out what you need and want, and do that. 

It’s okay if you don’t own a Myabetic bag, or can’t afford one, or think they’re ugly. It’s alright if you’ve never been to diabetes camp or don’t want to go. It’s alright if you don’t want to jump all into advocacy and chant, and rally, and cheer. It’s okay if self-care for you is sitting in a quiet room, and coming to a place of acceptance.

It’s okay if you don’t join any Facebook diabetes support groups, or seek out diabuddies in real life. It’s okay if diabetes is only a very small part of your life. It’s okay if it’s your whole life.

It’s okay if you don’t like going to the endocrinologist, or have to force yourself to see your eye doctor. It’s okay if you don’t like talking about your diabetes with others. Diabetes is not one size fits all.

It’s okay if sometimes you’re feeling overwhelmed, over-stimulated, and need to turn inwards, for yourself and rest sometimes.

There is no perfect way to (micro)manage, eat, exercise, handle stress, socialize (or not!), dose, count, or bolus. There is only the way that will work for you and your body. Find what works for you, and embrace that. 

Have you ever been pressured to manage your diabetes a certain way? Eat a certain diet? Exercise in a specific way? How did you deal with the pressure? Share this post and comment below; we would love to hear your stories!

Source: diabetesdaily.com

If Your Blood Sugar Could Talk

The diabetes online community (DOC) is great for finding information, asking for advice but also for a much-needed laugh. Over the past few weeks, Levi Davenport’s video that humanizes his blood sugar has gone viral within our community and many are finding this two-part video series not only hilarious but therapeutic as well.

I caught up with Levi to ask him a few questions about his own type 1 diabetes (T1D), the way he copes and his intentions of this well thought out video. Please make sure to watch the two-part video at the end!

When were you diagnosed? How did you handle the diagnosis?

I was diagnosed with type 1 when I was 15 years old, in 2004. I was playing high school baseball, and looking forward to getting my driver’s license. The last thing I was interested in dealing with was diabetes.

Photo credit: Levi Davenport

Did you have a good support system from family, friends, and doctors?

Absolutely, I was surrounded by fantastic people – family, friends, and Vanderbilt Children’s Hospital. I had no family history. I caught a very bad stomach bug (think – very bad). Afterwards, over the next 10 days, I lost 14 lbs. and had what I later came to know were the symptoms of high blood glucose. A doctor visit later, I was told I was the proud new owner of a dead pancreas. That was it. I had a two-week hospital stay and then my parents drove me back and forth to Vanderbilt to go through the T1D ‘crash course.’ None of us knew anything about type 1 and to date, I am the only diabetic in our family.

Being a kid is hard enough. Did you feel different and isolated due to your new normal?

Internally yes, and angry. Externally no, but only because I chose to hide it from everyone — friends, teammates, girlfriends, teachers. I only told people about it when I absolutely had to. I did not handle the adjustment well.

Did your diagnosis affect any of your life decisions (what you wanted to be when you grew up, going away to college, etc.)? 

Not at all. I don’t let T1D stand between me and something I have my mind set on doing. You are only limited in life by what you are willing to do.

Did anything in your life have to change in order for you to optimally manage this disease?

Oh yes, I had several dark years. I lost an incredible amount of weight. I am 6’5 and went from fit to emaciated in a matter of 2 years. I dropped from 240 lbs to 186 lbs. The catalyst for me was my children. I was in bed one night and felt my shins and thighs tingling. I realized that it was the beginning of neuropathy. I gave thought to how many years I was shaving off my life by ignoring my health, and within 2 months I had an insulin pump, continuous glucose monitor (CGM), and a watch that showed my blood glucose.

Photo credit: Levi Davenport

Did you turn to your family and friends for support?

Not really, I am a pretty private person when it comes to feelings and emotions (working on that).  After years of shutting everyone down, I could definitely see that they were happy to see what was happening though. Especially my wife. Living with a 24-hour grump took great patience. Since starting on the pump/CGM I have regained the 50 lbs and I felt so much better that I no longer cared about who knew I was a T1D.

Once I found the DOC, the face of this disease changed for me. Not only the information I got from others living with type 1 but I made real friendships that helped me feel less alone. Did you go online for support and information? Have you made any online connections that have helped lessen the burden of this disease?

I turned to the DOC when I started learning about resources like Spike and Xdrip. Shortly after, I discovered the social media groups and pages. I couldn’t believe it. If you aren’t a member of a T1D page or group, you need to check them out. There is a wealth of knowledge to be had, as well as encouragement and community. Seeing all of the people participating, commenting, sharing experiences and advice was very motivating. It also was when I realized I needed to find a way to contribute to the cause.

You clearly have a great sense of humor, do you find humor to be therapeutic?

I definitely find it therapeutic. It is a great pressure relief valve. I spend most of my day focused, serious, and perhaps not smiling enough. People in my professional life were somewhat shocked to see me be silly in that video.

Speaking of humor, what do you think of all the diabetes jokes out there?

If it is funny, I can laugh at it. Diabetes wins if you let it get in your head.

Your video has gone viral within the DOC. Did you expect such a positive reaction from our community?

I’m completely blown away. My channel ‘Between Two Lines’ is very new. I remember talking to my wife about making a funny video and being very nervous. Wondering if anyone would even think it was funny? Would anyone relate to it? You are really putting yourself out there to be ridiculed when trying to take something serious and use humor to encourage and inform. The T1D community is awesome. I’m glad people enjoyed the video and will certainly be making more of them.

What do you think makes it so relatable? What is one of your favorite moments? I know I laughed the whole time and have had the same thoughts and feelings as “Mr. Blood Sugar.”

I’m not sure I even know. Perhaps it is that many others feel the same way I do. Diabetes is stupid. I hate it. I hate everything about it. I wouldn’t wish it upon my worst enemy. But you know what? It isn’t going anywhere and I’m not going to let it steal the happiness from my life. So, I tried to find some humor in it.

My favorite moment was when “Blood Sugar” pulled his hoodie tight over his head to ignore me joking about muscles. Reminded me of my sister and how she responds to my younger brother and me bragging about fitness and working out.

What made you think of the idea in the first place?

There are a million funny videos out there that we all watch every day. I just thought I would take a stab at making one about being diabetic. It was important to me though for it to be funny, but not making fun of the fact that I had diabetes.

At the end of the day, what was your main objective of this video and what would you like people to take away from it?

The main objective of the video was actually to inform. Humor is a great tool for educating. I wanted people with diabetes to laugh, relate, and feel relief that they aren’t the only ones dealing with that garbage. I wanted non-diabetics to be able to watch the video and laugh – but learn about some of the things their diabetic friends, family, or coworkers deal with.

Thanks again for giving us all a laugh. I was away and having a tough time with my blood sugar and laughter was certainly the best medicine!

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Source: diabetesdaily.com

How People Invalidated My Feelings Towards My Diabetes

By Madelyn Corwin

I haven’t felt this way about my diabetes before this year. When I was diagnosed, it was a “do or die” attitude. No time to cry. No time to make my classmates pity me.

My teachers rarely believed me when I said I needed to get a snack for a low of 40. I believed them when they’d tell me, “I’ve had diabetic students in the past, but it’s never been like this. None of them have needed to leave the classroom this much.” I believed them.

I thought I was being dramatic. I thought I was doing something wrong. And that I was annoying. So from those points on, I hid it. Injections in the bathroom and skipping the nurse’s office before lunch. Sometimes I wouldn’t even inject for lunch because I’d be walking with my friend to the lunchroom, and I didn’t want to cut off our conversation because I had to inject myself. I’d skip completely. Because I was always told, “It’s not a big deal,” “You’re fine,” “It’s not deadly.” I didn’t want to be different. And I feared the comments of “Oh, you have to go do that?” because I thought people would think I was weak for injecting myself.

Photo credit: Madelyn Corwin

That’s how bad it got. I’d sit in the class after lunch period, and my vision would be so f***ing blurry, I couldn’t see the board or even focus. And then the teacher would, of course, get mad at me because I couldn’t answer a question they’d randomly called on me for. I’d play soccer with blood glucose levels up in the 350s and think it was fine. I’d get yelled at for “not running to the ball quickly enough.” I didn’t wanna say “because I’m f***ing dying coach!” I didn’t want to be viewed as weak.

I wish I had this community (Diabetes Online Community) when I was in high school and my early college years but I didn’t. I take myself so much more seriously now. I got my first A1c below 7.4% since I’ve joined this community. I’ve gotten rid of my microalbumin. My vision doesn’t blur as bad as it used to during highs. I eat healthier. I always give insulin. I always correct highs. I always change my site. I always check my sugar. I don’t think I would be able to do all that without meeting everyone I met online. Because I was conditioned to believe I was fine. That nothing was wrong. That I was normal. But that was the furthest thing from the truth.

 

I was made to feel for 8 years of having type 1 diabetes that my disease wasn’t serious and that if I complained about it, the typical reply was “at least you don’t have cancer.” I am so glad I found thousands of other type 1s online, especially those who’ve lived with this since they were kids as well that I can relate to. I used to have thoughts in my head like, “This s**t is so f***ing hard. Why am I always being told it’s not a big deal by perfectly healthy people?” or “I can’t believe I’ve had to do this since I was a kid and I have to do this for the rest of my life and everyone’s first response is, ‘At least, it’s not cancer.’”

I stayed quiet for seven years. I didn’t share with my online friends what was wrong with me because I was conditioned to believe it “wasn’t a big deal.” I thought if I told people what was wrong with me, they wouldn’t care, or they’d just say the typical “well, it’s manageable!” comments. I even hid the struggles from people I dated, which caused me to not take good care of myself because I wouldn’t correct if I was high because I didn’t want them to think I’m being dramatic or “too serious” about diabetes.

Photo credit: Madelyn Corwin

Photo credit: Madelyn Corwin

I’m so glad I found all of you. It helps me feel more validated for all the hard work I put in every hour of the day just to see the next. I feel my hard work to keep my body alive is finally recognized through the people I met online. I don’t think I was ever validated like this before. I was told I was “normal” and “can do anything” but I’m so glad I met some of you all to tell me that we aren’t normal, and we do need to have boundaries, and that’s OK. Thank you.

Source: diabetesdaily.com

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