Today we're pleased to welcome Michelle Auerbach, a 20-something fellow type 1 diabetes blogger in Ontario, Canada.  She's the daughter of a T1D mom, and was diagnosed herself at age 12. But she's also living with other health conditions that make life just that much more complicated...

Michelle Auerbach

 

A Guest Post by Michelle Auerbach in Canada

Maybe the best place to start this story is with how I was diagnosed with type 1 diabetes about a dozen years ago at age 12, and that I’m a blogger at Love Light & Insulin who was born and raised in Montreal, Quebec.

My current passions are to spread awareness, educate, and motivate people with type 1 diabetes, as well as other chronic illnesses that I also happen to live with. I have a sidekick rescue cat named Big, who is 5 years old and not a service or alert cat but one that I rescued from a shelter. He's scared of almost everything, but requires his daily cuddles and has a special bond with me. He’s a cat, so of course he’s the boss, but the love he shows for me on a daily basis has gotten me through so much of what I’m about to tell you.

First, my diabetes tale. 

I was 12 when I was diagnosed with type 1, but I think the memory is foggier than it is for most, because it wasn’t a shock to our family. See, my mom has had T1D since she was 8, and she’s someone I consider an expert as it's been 45 years for her and she is extremely disciplined -- in fact, I don’t know anyone more disciplined than her. She’s in amazing shape, works out every morning, and doesn’t look her age. Mild gastroparesis is one complication she lives with, and she manages it through her diet (again, very disciplined).

So I grew up around syringes, test strips, and BG numbers. I spent my childhood going to JDRF walks every year, and I have flashbacks of my mom and I going on walks around the neighborhood and she would break me off a little piece of a glucose tab as I begged. Maybe the Diabetes Gods looked down and determined my love for glucose tabs was enough...  

When I was 12, some sort of strange intuition made me check my urine ketones. The stick turned dark purple, and I showed my mom. I can’t imagine how she felt, but we immediately saw an endocrinologist at the Montreal Children’s Hospital and they diagnosed me.

I had just started high school when my diagnosis came. It was in the fall of the first semester, and for some reason that seems baffling to me now, I felt embarrassed. I hid my diabetes from my peers. My most prominent memory is the feeling it gave me of being different. I remember good friends encouraging me over the years to inject in public, but I would always go do it hidden in a bathroom stall. This continued throughout high school. I was never into talking about my diabetes, and for the most part tried to avoid the topic. When my mom wanted to talk about it, I’d stop her. I made it seem like it was no big deal, when it reality, it was a big deal.

Life went on, but then at age 19, another blow came my way.

A Medical Mystery and Online Peer Support 

I fell ill with a mystery illness, and this 100% made me feel as though I could have been a case study on that “Medical Mysteries” show. I was in school for professional photography, and I remember just feeling like I had the flu all the time. My legs felt heavy like lead. Taking public transit to school would take everything out of me. As it started to become nearly impossible to make the trip back and forth, I had to drop out of school.

Yet, no doctor could tell me what was wrong with me. They often put the blame on my diabetes control, which wasn’t great, but wasn’t too bad.

About this same time, I was really getting into Instagram. Little did I know, there was a whole community out there of people with chronic illnesses -- including a T1D community.

As I immersed myself into this chronic illness community online, I made friends and started following some chronic illness advocates. I was grateful for these friends, because it turned out that they’d be the ones to get me through the next six years of searching for a new diagnosis beyond just "out of control diabetes."

Strange things kept happening to me and they kept piling up.

Doctors kept dismissing me, but things kept deteriorating over those six years, while I continued to go undiagnosed. My muscles felt weak. I started to walk strangely. I developed urinary and bowel nerve problems. As doctors started listening to me, I found out why I was lightheaded and nauseous all the time.

Eventually, I was diagnosed with POTS (Postural Orthostatic Tachycardia Syndrome), a condition of the autonomic nervous system where your heart rate spikes upon standing. And finally, I got the call that a neurologist who saw me also suspected a rare neuromuscular disease called Stiff Person Syndrome, an autoimmune neurological disorder that affects your brain and central nervous system. That led to treatment options, and things started to make more sense. 

Living with all these illnesses with the addition of T1D has been a challenge. We all know how multiple factors can affect our blood sugars. Now take these diagnoses, trials of new medications and the nausea I deal with a lot of the time, and my T1D became far more of a challenge to manage.

As I started to have less of an appetite, my insulin doses needed many adjustments. Many times when I’m Low, I struggle to consume something to bring up my blood sugar. And those are just a couple of examples. 

Opening Up About My Diabetes

Little did I know that being diagnosed with multiple chronic illnesses is what it would take to get me to open up about T1D.

As mentioned, I hated talking about it in high school. I did what I had to do to keep myself alive and that was that. My mom however, has always been very interested in diabetes care and research. As I began to open up by participating in the DOC (Diabetes Online Community) and chronic illness community, my mom and I bonded over our type 1. Even though I can admit that we treat our diabetes very differently (her, very carefully; me, a little more recklessly), we started talking about it -- the funny parts, the not-so-funny parts, and how we felt about different topics surrounding it. We now laugh and bond over things on the Beyond Type 1 mobile app. We go to the Children With Diabetes Friends For Life conference in the summer, even though we never did that when I was little.

We’ve learned together how to make living with diabetes so much less of a burden.

And through all of this health-related trauma, I started a blog.

As a kid, I always wanted to be an author. In high school, I thrived in English. It was only natural that writing became an outlet for me. I started writing about living with type 1 diabetes, as well as some of my other illnesses. Through all of this I had a realization: I had a passion for advocacy. I felt like the world needed to know about these illnesses, and what it’s like for the people living with them. I felt like I wanted to connect with more people who had T1D.

I felt like the world needed to know that people surrounding them could be suffering from an invisible illness. Your co-worker, your classmate, your waitress... there can be an invisible storm going on inside their body right in front of your eyes. 

Unable to attend school or work due to my illnesses, I decided to make awareness the goal in my writing.

The more that could be spread, the better. So I began to dedicate my previously empty time to my blog. I hoped my words would make people rethink their opinions on things, or teach them about things they never knew. I wanted the world to know that T1D is a 24/7 job, and that we fight every day to keep ourselves alive. I also hoped that my blog would reach other people with T1D and that they’d be able to laugh at my articles, or even relate to them.

I wrote serious articles like “8 Things People With Type 1 Diabetes Want You To Know,” and reviews for products such as Genteel and my FreeStyle Libre, but also more lighthearted ones like “Is My Coke Really Diet?”, and “You Know You Have Type 1 When...” among others. Some posts are meant more for people living with these illnesses or similar realities to mine, and others are meant for people who aren’t aware of the details of these illnesses, or the things we go through because of them.

Naysayers have said that awareness does nothing and what we need is action. I disagree. I think that the more people aware of what daily life with T1D is really like, the more understanding the world will be, and consequentially, the less stigma and judgment we’ll live with. 

So while I am in no way grateful for all these other illnesses of mine, I am grateful for something. I’m grateful that they made me more open to talking about my diabetes, because I realized T1D was just as life-changing as the rest. So no matter the audience I’m writing to, if my words have touched someone or made them feel something, I can say that I have done my job.

 

Thanks for sharing your story, Michelle! 

 

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Disclaimer: Content created by the Diabetes Mine team. For more details click here.

Disclaimer

This content is created for Diabetes Mine, a consumer health blog focused on the diabetes community. The content is not medically reviewed and doesn't adhere to Healthline's editorial guidelines. For more information about Healthline's partnership with Diabetes Mine, please click here.