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You’ve probably seen an insulin pump, even if you didn’t realize it. Most of them look like clunky pagers connected by medical tubing to an injection where the insulin is delivered. Another kind is “wireless“ and looks like a little pod, which is controlled by a separate remote. With the first, the wearer is dealing with a Game Boy-like device strapped onto some part of her clothing or tucked away in a pocket. With the second comes an ovular bulge protruding from her arm or stomach.
Neither option is particularly subtle, and newly diagnosed 17-year-old me was repulsed by both.
Like most high school juniors, I was full of insecurities about literally everything from my shoe size to my handwriting, but mostly about my skin — I also have a genetic condition called keratosis pilaris, which causes my skin to be dry, bumpy, and often reddish. My body and the way clothes fit on it was one thing I was confident about, so wearing a bulky insulin pump (all the time, forever) was highly unappealing.
“What if I want to wear a dress that doesn’t have pockets? What about prom? What about dance competitions? What about the beach?” I was a busy high schooler and I didn’t want to take the time to think about these things while I got dressed every day. I certainly didn’t want to draw negative attention to myself. I didn’t want to answer questions from rude mean high schoolers about my disease. I didn’t want people to treat me like a sick person. Most of all, I didn’t want to give up the freedom of getting to wear what I wanted and look how I wanted when I felt like diabetes had already taken a sizable portion of my freedom away.
I was 17 then. I’m 25 now, and I still feel the same way.
Despite the difficulty of concealing it, many diabetics love wearing a pump as opposed to the alternative — insulin injections, usually four to seven per day. A pump offers continuous and, as a result, often more control over blood sugars and better overall health. Although they’re not without their challenges, pumps can theoretically provide more convenience than injections. Allison Love, a 26-year-old associate producer at CNN, has worn her pump for eight years and wouldn’t go back to shots.
“Anytime I was out at a restaurant, I would go to the bathroom to take a shot, which is honestly pretty gross,” recalls Love. “I needed privacy. I didn’t want anyone asking me questions about it.” So when one of her nurses told her about the insulin pump, Love knew she wanted the change. She “made me feel like living a normal life with diabetes was possible,” said Love. Since getting on the pump, she hasn’t looked back — for the most part.
“I love it, but it drives me crazy. It’s really annoying having something attached to you all the time,” said Love. “Anytime I get to take it off I feel really free. I went snorkeling in April and I didn’t wear my pump and went back to shots for a day, and it was actually kind of nice. I felt like I was able to forget that I had diabetes for a little bit.”
Like Love, I have Type 1 as well. (There are two.) Being Type 1 means our bodies don’t make any insulin on their own, so we have to regulate our blood sugars manually through insulin, which also means that we’re subject to the consequences of both high and low sugars.
However, I do believe that as far as chronic diseases go, diabetes is, like, pretty chill. (Except I really hate the word diabetes, especially when it’s pronounced “die-uh-beet-us.” Everyone please cut that out.)
First, diabetes is very manageable — my health largely depends on how well I’m taking care of myself. There’s also extensive research into treating (and curing) diabetes: Just last year, the FDA approved the first artificial pancreas. Most of all, though, if you look at me, you wouldn’t know that I’m sick, and I’ve never thought of myself as such. And until about a year ago, when I had a seizure while I was sleeping as a result of my blood sugar dipping too low, I really hadn’t experienced an outward manifestation of my disease.
After the seizure, it was time to revisit the question of an insulin pump, but I still couldn’t bring myself to give up this sliver of vanity to potentially be healthier and safer. Instead, I compromised with a continuous glucose monitor (CGM), a small device that monitors my blood sugar 24/7 and sends the data to my phone, which then beeps and vibrates when I’m dangerously low or high. It’s still something I have to wear on my body, but it’s smaller than the pump (think iPhone versus an iPod shuffle) and attaches with adhesive. Because there’s no tubing involved, clothes are more accommodating. Even so, I still hate it sometimes.
My sensor gets caught on things, especially long sleeves. The adhesive aggravates my skin condition. Sometimes it falls off, which gets expensive. I place mine on my arm because it’s better than wearing it on my stomach and constantly snagging it on my jeans, but it’s also worse because it’s highly visible. People ask me about it — sometimes men in apparent come-on attempts (which, like: Why, men?), sometimes fellow diabetics, and sometimes friends of friends who don’t already know what it is. While these questions tend to be well-meaning, it’s a rather personal subject to dive into with strangers at concerts, bars, and intersections.
Love deals with this, too. At work, her pump isn’t as much of an issue because she can easily clip it to her pants’ waistline or pocket, and colleagues either know about her diabetes or recognize that it’s a health thing, but dressing for social activities is more difficult. “Going out to a bar at night with my friends, I definitely feel a little more self conscious about it,” says Love. “Sometimes I just feel like a dork.”
“Just a few weeks ago, I could tell this guy at a bar was looking at me, at my pump,” recounts Love, who was wearing it clipped to her high-waisted shorts. “ I could just feel his eyes on me. When we eventually made eye contact, he asked ‘Is that a pager?’”
At a concert this summer, I had a similar experience when a guy standing next to me struck up a conversation by asking me what was on my arm. I was a little put off at first — it was the first time a stranger had asked me about my sensor — but we chatted for awhile about things other than my medical device, and I got over it. Just a few weeks later, I saw this same guy at another concert, where he proceeded to introduce himself to me and ask if my sensor was related to diabetes. He said “I met a girl a few weeks ago who had something like that.” I cut him off. “Yeah, me.”
Even when they’re well-intentioned, interactions like this can feel image-defining. Even from across the bar, that other person isn’t seeing you, they’re seeing your device — your disease. An insulin pump — or a sensor — can quickly become a physical representation of the illness to others and, potentially more infuriatingly, to the wearer herself.
Diabetes is a disease that requires hyper-vigilant self-awareness. You’re constantly checking your blood sugar, which is directly correlated to how many carbs you’ve eaten and how much insulin you took for it. Due to this perpetual attention to exactly what’s going in your body, diabetics are at risk to develop body image issues and eating disorders. When you tack on questions like “How do I look?” and “Will people notice this thing on me? Will they think it’s weird?” it’s a perfect cocktail for insecurity.
Especially for women, getting dressed when you have a pump can be extremely frustrating. Pants and shorts are fairly easy, but skirts and dresses get complicated.
“Really it’s dresses that are the most difficult,” said Love. “I usually look for dresses with pockets, and then I can just cut a hole in the pocket and stick the tubing through the hole. But not all dresses have pockets, so that’s obviously a big problem.” Skirts get tricky when the material isn’t strong enough to hold the pump and the weight of the device pulls down the garment.
This summer, Love was shopping for a new dress for her upcoming beach vacation when she got fed up with the lack of good options. “I was looking at Reformation, and all of their stuff is close-fitting, no pockets,” she said, which really leaves no place to put the device. “Every now and then I’ll wear a dress and clip it to my underwear, but then I just have to go to the bathroom to take insulin. Even when I do that, though, it still shows this awkward rectangle bump on the side of my hip. I just felt so frustrated.”
Love’s considered buying dresses and then getting pockets added by a tailor but is hesitant about the risk involved, because pockets may make the dress sit differently and ruin the silhouette anyway. Plus, there’s the added cost of taking new clothes to the tailor all the time.
For men who wear insulin pumps, putting outfits together that conceal the device may be less complicated than it is for women, but it’s certainly not without its challenges either.
Kevin LaCherra, a 25-year-old court clerk, has been wearing a pump for almost two years, but wasn’t diagnosed until he was 21.
“The pump is exhausting in a way that the [shots] are not, because it literally always has to be attached to you,” said LaCherra. “It’s, like, another thing the size of my phone to be carrying around all day.”
For work, where he wears a button-down every day, LaCherra tucks his pump into his pants pocket, runs the tubing up behind his belt, and sticks it through the bottom buttons on his shirt. Unlike mine and Love’s experiences, though, he’s never been asked about it.
“I think one of the reasons why is that I’m so discreet. I’m pretty careful in trying to avoid any questions about it,” he said. “Diabetes can be a really invisible disease if you want it to be.” LaCherra doesn’t want his coworkers to know out of concern that they might consider him less capable, a type of discrimination known as ableism. “I don’t know what conclusions they’ll draw.”
LaCherra’s method of tucking in his pump leaves a very small amount of the tubing showing, which constantly tugs at his shirt and needs frequent adjustment. This is annoying, but he also acknowledges that “in terms of women’s clothes, I can’t even imagine.”
A company called Pocket Innerwear makes underwear — boxers, camis, bras, lacy garters — that have special pockets for insulin pumps, but the garments have to be pretty sturdy (a.k.a. not sexy) to support the weight of the pump. Attaching the device to undergarments also eliminates the convenience the pump is supposed to offer, because the wearer needs privacy to access it.
For young kids with pumps, and even American Girl dolls, there are all kinds of accessories that glam them up and make them more fun, but for adults that are trying to keep them hidden, the options are less appealing.
“At the end of the day, it’s fine,” says Love. “I have to do what I need to do to stay healthy. My health is more important than how cool I look.”
There is a part of me that agrees with Love, that knows I would probably be a little bit better off with the pump, and maybe even happier, too. (For the record, my overall health is fine). But I still can’t fathom permanently tethering myself to a pager-shaped reminder of my illness.