The growth of the online diabetic community is one of the single most beautiful things to have come out of this decade. The internet fad, “2009 vs 2019” is what brought this to my attention recently, as so many of us have transformed from awkward teens sporting the Myspace-duck-lips to adults posting our wedding photos to Facebook. Or at least, this has been my personal experience. My diabetes turned a decade old this year as well.  As a result, I’ve been reflecting on how much my perception of it has changed, molded by the ever-transforming community of myself and other type 1 diabetics who have created a strong and meaningful presence online.

In many of my Youtube videos which contain mostly diabetic content, I have mentioned that the biggest reason I have chosen to talk so much about my chronic disease online is because of the lack of information I was able to find when searching the web in the days after my diagnosis. Stuck in a hospital for a week, the first week of my sophomore year in high school, in fact, it was just me, a laptop, and about a million questions. 

Of course I found the basics – what is diabetes, what are the symptoms, etc., etc. There was endless information about fundraisers, charities, and some interesting information about the history of type one and the development of insulin as a viable treatment. However, the real information I was looking for just…. wasn’t really there. I needed answers to my REAL burning questions. Answers a doctor couldn’t give me.  I wanted to know things like:

• What is it REALLY like being a teen with this disease?
• What would school as a type 1 diabetic be like?
• What would raising a family as a type 1 diabetic be like?
• What is everyday with this disease truly entail, emotionally and mentally?

Granted, there were a few videos here and there on Youtube that were more along the lines of the content I was craving, notably “1HappyDiabetic” and his videos (which, upon writing this, I am noticing he has not posted for 7 years now), and an entertaining video called “The Diabetes Rap” (watch it here, if you’re curious https://www.youtube.com/watch?v=DdF54FZu17I ).

I wanted videos of real people with their honest testimonies of what life was like after a type 1 diabetes diagnosis. I wanted to see how people weave their normal, every day life, into life with a chronic disease. I wanted to see someone my age, going through similar things.

So in 2014 I decided to start off by filming a video where I spoke in detail about my diagnosis. I figured it would be a good place to begin, considering I had no practice or experience with creating video content.  This way, I could just sit and recount a memory that was still VERY vivid to me, which meant I wouldn’t have to struggle too much with figuring out what I was going to say.  I find that when an experience is very emotional for me, it’s fairly easy to allow that emotion to flow freely.  In other words, it felt very natural to talk about it.

From there, I started focusing on bringing up my diabetes in other social media spaces.  I would tweet about the annoying, every day little nuisances that come with this disease, like treating a low blood sugar in the middle of the night, or the dread that accompanied the night before an endocrinology appointment. Every now and then I would post a photo on Instagram showing my pump, hoping another type one would come across it and feel seen. Or, in the very least, to start a conversation with someone who wasn’t familiar with type one diabetes, and who wanted to know more. It all just felt…very RIGHT. I was bringing awareness, expressing myself fully, and even gaining confidence.

However, sometime within that same year, I hit a bit of a wall. I received my first “hate” – in the form of an anonymous message on Tumblr. I still have the message screenshotted somewhere on my old laptop, in fact. I don’t have that message with me now, nor do I remember what it said exactly, but it was something along the lines of, “You talk too much about your diabetes”. This person essentially accused me of using my chronic illness to get attention. They said I needed to just get over it, and stop complaining. They even said what many of us chronic illness fighters have heard so many times before: there are people who have it worse.

Of course, I considered this could be someone who just dislikes me and disliked that I was gaining confidence and strength. I considered it was maybe someone who knew me from school and maybe just had something against me. I also considered that maybe it was someone who was just bored with their life and had nothing better to do than criticize me.

But… what if it was none of those things? What if that person was right in their accusations? Social media CAN be deceiving in that it can make us feel so validated that we don’t stop to think about what we post anymore because that validation becomes addicting . I didn’t want to believe that was true for me, or that there was this hugely narcissistic aspect to my actions like the anonymous messenger suggested.  I just wanted to talk about my diabetes until it didn’t feel so stigmatized and scary anymore. What could be wrong with that?

Fortunately, after I shared the post to Instagram I  was instantly inundated with support from this new community I had gained. Pretty much everyone was in agreement that the message was uncalled for and assured me that what I was doing was totally positive and had helped so many people come to terms with their own diabetes. I received messages from friends as well, ones who I would never have if we hadn’t connected through the DOC (Diabetic Online Community).  I was reminded that ultimately, this was something that was bringing me (and even others) a little slice of happiness and acceptance.

When I finally responded to that person, I let them know these things. I told them that I don’t post for them. I post for people who, like me, just want to feel normal. We just want to know that our frustrations with our bodies are valid, and that we aren’t alone in that. We want a community, because we are stronger together. Also, I reminded them that if they don’t want to hear what I have to say then they definitely didn’t have to follow along with my social media presence. Nor was anybody forcing them to watch my videos or read my tweets.

Over the years I’ve received more ignorant messages and comments like that first one. I’ve even received some in person! For some reason, people who don’t understand what it’s like to live with a chronic illness also can’t seem to understand what it’s like to feel better just by TALKING about it. So let’s talk about it! That doesn’t have to change just because there are people who are annoyed by it. Let them be annoyed, if that’s what they want.

I am never going to stop speaking my truth or reaching out to others to find mutual comfort in the frightening uncertainty of this disease. I hope that everyone who is dealing with something that they are holding inside, no matter what that is, knows that they can talk about it and there will be people there who want to listen, and there will be people who can relate.

It brings me SO much joy that nowadays I can log onto Twitter, Instagram, and Youtube and there is so much diabetes-related content that it has just become the new norm. It doesn’t feel so lonely anymore, and no one can take that away from us just because they don’t understand.