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.
On the other hand, people doubt your sickness all the time. If you’ve made arrangements, as I have, to adjust your work to your health or have had to be your own vocal advocate in any kind of situation, people analyze and doubt your every move. “But you’re laughing and socializing – you don’t LOOK sick!”
Let me be really clear here – I am far too consumed with trying to assure myself that I am well to waste time proving to you that I am sick.
For anyone who lives with chronic illness, it’s something we have to brush off. Because at the end of the day, none of these things we deal with are actually invisible. They’re just very well hidden.
At every moment of the day, I have two devices on me that help keep me alive. Since I was 11 years old, I’ve had a tube sitting under my skin to deliver medicine I would die without. Another sensor under my skin keeps track of how the medicine is working at any given moment, if I need to adjust based on food, exercise, stress, sleep, water intake, temperature, and any number of things that affect how my body is processing my medicine.
Thing is though, not only is it hidden from you, but I hide it all from myself.
I don’t keep my pump and sensor sites in view anymore, not because I’m ashamed or embarrassed, but because I get overwhelmed when I have to be reminded that they’re there.
For the first 5 years, I placed my insulin pump sites on my stomach. When we moved back to Hawaii, not wanting my abdomen to be scarred when I was wearing swimsuits that put it in full view, I moved my sites to my backside.
When I started on my continuous glucose monitor, I placed my sites on the back of my arm. After a few too many quizzical looks on the subway (I didn’t care about the looks, I cared about the reminders) and constantly accommodating the site when I was trying to sleep on my side, I moved it to my back, right at my waist line.
I know they’re there. I would have panic attacks if they weren’t. They are my comfort blankets that let me know I’m going to make it through the day, but I don’t want to think about them.
When people question whether or not we’re really sick, I wish they knew just how much we are constantly doing to protect our mental health. Often, as doctors are taking test after test, tests that are invasive and disheartening and only measure how our bodies are doing and not our minds, it remains solely up to us to take care of whether or not we’re going to be able to face the day.
When I’m smiling and laughing, going out and about and being social, sometimes it’s because I really do feel well that day, and that should be celebrated, not questioned. But sometimes it’s because I want to act well. I don’t want to be reminded that I’m ill.
I hide my sickness from myself, because that’s how I survive this. For almost 19 years, that is how I’ve survived this. For the rest of my life, that is how I will survive this.