I recently read an excerpt from a book that I knew would absolutely hook me. Invisible: How Young Women with Serious Health Issues Navigate Work, Relationships, and the Pressure to Seem Just Fine by Michele Lent Hirsch was published just last month and I can’t wait to get my hands on a copy and cover to cover. I really hope that somewhere in there will be the story of a young woman living with diabetes. Because our condition – so invisible to so many – is anything but to those of us living with it.
I have often grappled with the idea that diabetes is invisible, because sometimes I feel that I may as well be walking around with sandwich board advertising to everyone that I have a body that is broken and doesn’t do what it is meant to do. And this confusion was clear from the beginning when I couldn’t believe that my pain and hurt and confusion about my diagnosis couldn’t be seen by everyone.
As I struggled to learn to come to terms with a body that apparently had decided that the right thing to do was destroy perfectly fine bits of itself, I had to learn how to cohabitate with all the paraphernalia that came with it. The silver lining? To this day, I just keep buying handbags and justify the need for them to be designer with cries of ‘MY BODY BROKE MY PANCREAS’. (Also: master of justification!)
I certainly know that I’ve had it easy in some ways. I was diagnosed at twenty-four while in a relationship with the man I married later that same year. He learnt diabetes alongside me. I never needed to try to hide from him, or introduce to him the parts of diabetes that in day-to-day life may be hard to see, only becoming clear when the covers literally and figuratively come off.
He saw needle sights occasionally bleed, then the bruises and lumps that popped up almost immediately. He could see the clusters of tiny black marks on my fingers from the dozens, soon to be hundreds and then thousands, of finger-prick checks I was doing. His first night of there being an insulin pump in the bed was my first night, and the leftover residue from changed sites, recovering scars, and slightly grotty tape never needed to be explained, because we discovered them at the same time.
But even without needing to navigate diabetes while dating, I still go to great pains to hide diabetes at times. I think about the almost-torture-like contraptions I’ve worn to disguise the pump infusing insulin into me, and the alarms I’ve silenced, pretending it was my mobile phone or the subjects changed to divert from questions about my health.
I wear clothes that I know can conceal evidence of my diabetes. It took a lot of mental coaxing for me to wear the bikini I bought at the beginning of Summer because I didn’t want people to notice the scars from healing sites all over my stomach, or the infusion set stuck firmly to my upper hip.
I’ve worked out the fact that most people think the bright patch on my arm is a nicotine patch means I get asked about it a lot less than I expected, but I spend most of the warmer weather in tops with sleeves that cover up my Dexcom and the Rocktape holding it place.
Of course, it’s not just the physical aspects I try to conceal. I go to great pains to hide the pain, the frustration, the fear, the sadness. Out of sight, may not mean out of my mind. But it may mean it’s out of others’ minds, and really, they’re the ones I want to hide my diabetes from; to shield from my (physical and emotional) pain.
Undoubtedly as women, we need to work harder, be smarter, be faster, jump higher to prove ourselves. And those of us who have a chronic health condition along for the ride have to push even harder: I’m okay! I’m fine! I’ll be perfectly well enough to do this! You can count on me! No, there is nothing wrong at all! (Or in diabetes terms: I’m okay! I’m fine! I’ve no problems dealing with this hypo and still taking the meeting! I’ll just silence that alarm – it’s nothing!)
And while Michele Lent Hirsch’s book may be about young women, (and that ship has sailed for me), the issues are, I believe, the same for women in their 40s. I have the same anxieties and the same frustrations of diabetes I had 20 years ago when I was diagnosed. I still struggle with my brokenness. And I still do all I can to conceal it so everyone thinks I am, indeed, just fine.
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April 9, 2018 at 7:58 pm
Kayleigh Tanner
I can definitely relate to this one! I’m 26, and fully in the throes of dating (god help me…). If there’s food involved, I often do a very subtle, speedy injection under the table, because I never know when I should bring up the fact I have diabetes. I’ve also slipped out of meetings to treat diabolical hypos under the guise of ‘refilling my water’. I don’t know why I can’t just say what I’m doing! I wear a Libre sensor, and I’ve stopped buying tops without sleeves now, not because I’m embarrassed but just because I don’t want people to ask about it and keep my diabetes at the front of my mind all the time. I definitely keep my diabetes as invisible as possible, for my own peace of mind as much as anyone else’s, and I’m not sure what it will take for me to change that.
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April 10, 2018 at 10:37 am
Rick Phillips
I used to try to conceal diabetes. No more. I am 60 and have little to lose except my life if I conceal it. I do not regret not being young these days. I am happy to have those concerns behind me.
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April 13, 2018 at 6:39 pm
Merinda
Heck, I’ve never concealed anything to do with my diabetes.. I’ve always performed blood tests in full view of others in restaurants, or local pubs. When my pump alarm sounds and people inform me I “have a text”, I tell them, “No, it’s my insulin pump reminding me to do a blood test”. All these things engender conversations which I feel helps to educate those who have no idea just what it means to live full-time with diabetes. It’s hubby who tells me I should just agree that it’s my mobile beeping!
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April 14, 2018 at 7:05 pm
theinsulintype
I think I’ll buy this book. I saw it posted somewhere else too and am intrigued. Have you found a part with diabetes, or is it blankety written? It’s easy to hide diabetes, but I hope this book dives into the deeper issues, the part where we sugar coat what it’s like, what we have to do to appear normal when our body is out of control. I hope you post a review!
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