It’s been really interesting to watch how some people react to the idea of being sick, particularly when it comes to mental and chronic health issues. Having a body that doesn’t quite work the way everyone else’s does isn’t weak. It’s the most normal damn thing there is.
No one’s body works the same as anyone else’s. Some of our quirks are a little more pronounced than other’s, sure. But the same way someone has freckles, my pancreas doesn’t produce insulin. The same way someone has a thumb that bends all weird (you know what I’m talking about), my brain doesn’t produce enough serotonin.
It doesn’t make me weak. It makes me human.
It doesn’t make YOU weak. It makes you strong as fuck. Continue reading “Sick doesn’t equal weak.”
Before I was diagnosed with type 1 diabetes at age 10, I had been sick for months. Not eating, downing gallons of water and soda every day, lethargic, sleeping as much as possible, peeing every 30 minutes. In the last month before diagnosis, as I rapidly lost 30 pounds (on a 5’2″ frame), multiple doctors told my mom I was doing this on purpose – losing weight on purpose – to better fit in with my new classmates. I actually had an incurable autoimmune disease but, because I was a preteen girl, multiple doctors assumed I had an eating disorder. When I was finally diagnosed – by a nurse, as I was carried into the emergency room at 4am on Thanksgiving morning – I was likely less than hours from a permanent coma or death from severe diabetic ketoacidosis.
When I broke my ankle in 3 places while hiking when I was 26, I called 911 from the trail. I told them my ankle was broken (it was visibly broken – bone at odd angles and everything). They kept on insisting it was sprained. They took an hour to find me on the trail. When the EMTs walked up – and I mean SLOWLY walked up – as soon as they saw my ankle they sprang into action. “OH SHIT. Shit. We should’ve brought you pain meds. We didn’t bring the stretcher down with us. Can you hop?” Three places. My ankle was broken in three places. And I told them that. And they didn’t listen. Continue reading “When my doctors don’t listen to my pain.”
My immune system attacked my body when I was 10, resulting in a loss of ability to make a crucial hormone called insulin, which turns the food you eat into fuel for your body. Without insulin, the sugar from your food compounds in your blood stream, quickly poisoning you from within.
Before 1921, this event was a death sentence. The only “treatment” was starvation. Even over the last few decades, being diagnosed with this autoimmune disease meant shorter lifespans and drastic changes in what life could look like. Outcomes weren’t great. Complications were inevitable.
Technological advancements have made it so that I, by being born at the right time and into privileged circumstances, can not only live, but can live the life healthy-me would’ve lived too.
But the reality is, people still die from complications of type 1 diabetes all the time. And whenever I hear stories of it, I break down. When people die from this disease, it’s rarely from their own negligence. It’s mostly from simple mistakes – not realizing that what felt like the flu was actually diabetic ketoacidosis. Not waking up from a low blood sugar and dying in your sleep. Miscalculating how much medicine or food you would need when you’re out and about. Or, also commonly, from not having the money or resources to afford what you need to survive. Continue reading “What it’s like to watch people die from your disease.”
I’m worn out. Mentally. Physically. Drained.
Not more than anyone else. I get the times we’re living through right now. None of this is normal. We’re all feeling depleted.
It’s in a different way. Beyond the emotional and mental burden of everything happening in the United States right now, my immune system has been firing at insane rates again, and my body is breaking down. Again.
This isn’t new. This happens in cycles, multiple times throughout the year. Continue reading “Being chronically ill in the age of resistance.”
I’m in Barbados with my best friend, riding shotgun in her mom’s Jeep, guiding my hand and arm to ride a wave of air out the window as we jet down the highway from the west coast back to her family’s house in the south. It’s the last day of my holiday stay and we’ve been chatting about life. I’ve known Marielle since 2004. We met right at the start of our freshman year at the University of Miami and there’s not a lot we haven’t covered, but getting older and starting to approach all of the big life things that come with it has turned our tone a bit from our normal jokes and singing.
“This is awful to ask,” I say, “but is Down Syndrome hereditary? I realize that I don’t actually know much about it.”
Marielle’s little sister Natalie was born with Down Syndrome and, for as long as I’ve known Nats and likely for the full 27 years of her life, she’s been the the most glitter-and-pink obsessed person I’ve ever met. Their uncle Eddie had Down Syndrome too, until he died in late 2016.
“It’s not, so it’s always been interesting to me that we’ve two people in our family with it, so close together.” Continue reading “Does my disease make me a burden?”
Today marks 19 years since my type 1 diabetes diagnosis. It’s meant a lot of needles. Guesswork when my life is on the line. Lost sleep. Insurance fights and ignorant doctors. Fear. An incredible weight that threatens to break me sometimes because this thing that so deeply affects my life and my well-being and my future is never going away.
But it’s also meant resilience. Empathy. Learning how to shine my light brighter for myself and others. Understanding the strength of my voice. Learning how to fight harder because, in so many cases, our lives depend on it. A deeper faith in myself and those who care for me. Having people in my life who seek to protect me in ways humans don’t typically have to do for one another.
But mostly, it’s meant learning that type 1 diabetes – that having a chronic illness – doesn’t define who I am. Continue reading “19 years.”
Disclaimer: There’s a picture further down in this post that isn’t quite NSFW, but it might make you blush. It is of me. I don’t share it to be sexual, but so that you can have a better understanding of these things I wear on my body every day. After so long in the medical system I see my body as just that – a body. It’s been poked and prodded and treated like a medical experiment by me and by medical professionals. After a while of being sick, you start to see your body as separate from yourself. That said, if you don’t want to see a picture of my backside, don’t scroll all the way down. The non-backside including pic is directly below.
Invisible illness is a phrase thrown around in the chronic illness community a lot – it is a simple representation of a reality we live with every day.
These diseases we manage, no matter their weight, are hidden from most. On one hand it’s really great – I am privileged to not get pittying looks from strangers, I enjoy full mobility, and for the most part – unless I’m having a particularly rough day or purposely showing or talking about what I’m going through, no one will ever know that my body has been waging war on itself since I was 10. Continue reading “I hide my sickness from myself.”
Hi! Been a while, friend. You haven’t seen me on the blog or YouTube because I’ve been a bit busy writing my book (!!!) which is now complete and will publish on September 1. I’ll be posting more information about that soon!
In the meantime, I wanted to share a bit of the medical stuff I’ve been going through this summer in an effort to share with anyone who has been going through anything similar. I know there are many of you who have systems that don’t seem to cooperate, who are in a lot of pain, who are constantly exhausted, who seem to be sensitive to absolutely everything – heat, food, noise, whatever else. Consider me your guinea pig. Continue reading “Eastern vs. Western Medicine”
And just in case you need some background on this spoonie thing, here you go!