I Don't Want to Be a Burden, but I Also Wish People Understood My Illness

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 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 have two people in our family with it, so close together.”

We started chatting about different people we had heard of with Down syndrome, like the teacher in Argentina, and the people in the documentary “A World Without Down Syndrome.” I rarely see Marielle get agitated; she’s known for living in her own world a bit and being downright adorable about it. But as she spoke about the new NHS screening test that can detect Down in a fetus with a 99 percent accuracy rate (after which some women choose to terminate their pregnancy), I could feel a slight shift. Marielle got steadfast – there would be no arguing with her on this point (not that I would have wanted to). “Our family wouldn’t be the same without Nats, without Eddie. They bring so much to our lives, just the way they are. To make the decision to just not even give them a chance? I can’t help but feel like that’s completely rash.”

I started thinking about my own disease, type 1 diabetes. It’s autoimmune – for some reason the immune system turns on a person’s body and kills off the beta cells that make the hormone insulin, which breaks down the sugar in food into energy. Without insulin, all of the body’s systems quickly shut down. There’s no cure. No way to prevent it. Lifelong treatment is expensive and taxing. Potential complications are numerous. There’s a way to test for the genetic marker antibodies once a baby is born, but not in the womb.

 

“I wonder sometimes about how it would be if I passed type 1 down to my kid. I know I would feel horribly guilty; it would break my heart. I know I’d be there to help them and they’d have more resources than most, but it just doesn’t seem fair.”

When a mom has type 1 diabetes, there’s between a one and four percent chance she’ll pass it on her to her child – which is actually almost equal to the chance that a person could develop type 1 diabetes with absolutely no genetic history (like in my case). For some reason, and we don’t know why, if a dad has type 1 diabetes, there’s about a six percent chance he’ll pass it on. Still not statistically high. Despite knowing the numbers, it’s still a thought I have. What if?

“Who’s to say, though, that a kid won’t grow up and have issues with blood pressure, or alcohol, or cancer, or any other number of things?” Marielle said. “Are any of those worse, or better? What’s the line of what’s OK to have and what’s not?”

Beyond whatever genetic makeup I could pass down to a hypothetical kid, I’ve always worried about what a burden my own disease is to the people around me. I don’t mention my diabetes much in person unless I’ve been asked about it. I’ve gotten better about being more forward when I need to eat, or when my blood sugar is doing weird things I need to respond to. But I don’t like to make a big deal of it.

I’ll eat things I know I really shouldn’t when other people have cooked for me. I don’t like the feeling of people having to change their routines for me. When I’m for some reason in a situation where I need to explain the devices I have hooked to my body, I cherish people who make a quick joke about my being a cyborg and then keep it moving. Since I’ve been old enough to deal with it, I’ve much rather it been my load to carry. Not because I actually want to carry it alone. But because I don’t want to feel like I’m placing it on anyone else.

It’s a struggle between not wanting to be a burden but wanting people to understand enough that they pay attention. And never because I’ve asked them to. Only because they want to. Because this is not an easy thing to carry alone. It’s heavy. I don’t want it to be heavy for anyone else, but it makes it infinitely lighter for me when I realize other people remember.

Like when Marielle randomly asks if I’ve eaten often enough today.

Or when a new friend to whom I explained spoon theory makes a well-placed joke about not having enough spoons to do something silly and ridiculous.

I don’t want to be a burden but I do want you to get it. And I don’t know how to balance that need of not wanting this to be a solitary thing with not wanting anyone else to carry this for me. I don’t want anyone to worry, but I do want them to be aware. I don’t want to put anyone out, but I love it when it’s become part of someone’s routine to check in.

And it makes me feel slightly better when I remember how utterly human this is. Just like Marielle is fiercely protective of her sister and her uncle and would probably throw several of her beloved stuffed animals with all the ferocity she can muster at anyone who suggests they’re a burden, I know I have people in my life who would fight someone for saying I am one. And I would certainly call anyone in my life silly for even starting to utter the phrase, “I don’t want to put you out, but…” when it comes to anything they need to be OK. But for some reason we humans think that we’re in this alone, when we never are.

And I am utterly thankful for all of you who check on me when I get into this “am I a burden?” place. Thank you for not even letting me finish the sentence and for opening my juice box when my hands are shaking from a low blood sugar. You can’t begin to know what a big action that is.