To the every day observer, I look like a normal 27 year old female. It isn’t until you spend time with me or get to know me that you learn I’m everything but. Not everyone notices the port a cath installed in my chest, just below of collarbone, or the backpack I sometimes tote around with my feeding tube. You don’t see the insulin pump hiding under my clothes, or the countless pricks on my fingers that have tested my blood sugar. You don’t see the anti emetic patch on my arm that helps my nausea and helps to keep me from throwing up. You don’t know that I’m struggling to breathe and just keep myself upright.
That’s because all of my diseases are considered invisible.
Diabetes, gastroparesis, ehlers danlos syndrome, dysautonomia, POTS, digestive tract paralysis, and more. All severe and debilitating, yet no one can see them on the outside. They’re hidden, invisible, all the while ripping me apart and killing me on the inside, slowly, ever so slowly. But no one can see these, unless I’m having a particularly bad day. It’s why I get asked why I’m never in class, why I can’t get out of bed, why I can’t come hang out with my friends all the time.
I recently came across a handy image of how to tell EDS pain:
I cried last night, realizing that I function at a 20. I lay in bed all the time, I get out of bed to get my medication, go to doctors appointments, sometimes run to Starbucks. Sure I have friends, but I don’t see them. I have family commitments, but most of the time I don’t feel well enough to go to them. My niece and nephew are having their first holy communion Saturday, and i even picked out a dress to wear to it. And I even want to go. But I know I’m going to end up falling asleep in my nieces bed, too tired to handle the 42 people in the house. My stomach won’t be able to handle any of the food there, I’ll have one glass of wine and I’ll be done. I can’t go to dinner for my brother in law’s birthday because it’s at a BBQ place and just the smell will do a number on my stomach.
But for the communion, I’ll look nice. My dress is pretty, it’s a Free People number I got from Poshmark. Lace all over. Pairing it with flip flops because I’d fall from heels now. I’ll straighten my hair, I’ll do my makeup. No one will no I’m sick. Because I don’t look sick, right?
I feel like that’s how so many people in the chronic illness community look and feel. So many of us are invalidated. One of my best friends fits this category.
She’s been my best friend since 2013. Funnily enough, she came to visit me from Australian several days after my first hospitalization for gastroparesis. At the time, I did not know how serious my gastroparesis would become. I only had gastroparesis, and at the time she had chronic pain, but beyond that, we were both chronic illness free. I would post a picture, but out of respect I am keeping her anonymous (although many readers probably know who I am talking about).
Cut to 2016. She has EDS, gastroparesis, POTS, dysautonomia, a chiari malformation, cyclic vomiting syndrome, and more. She came to the US for treatment because treatment in Australia is nonexistent. Doctor after doctor after doctor refer her to psych because they tell her there is nothing wrong with her, while she cannot keep down the bare minimum of food and water. Some refuse to treat her. Some arrange to have her sent to the psych ward because they believe she has a fear of food or water and it’s turning into an eating disorder. At this point, she cannot eat or drink, but no doctor will do a feeding tube or port, despite the alarmingly high amount of weight she has lost. Why? Because she doesn’t look sick to them. Her blood work doesn’t show he’s malnourished. Her mother, who works in nutrition, is furious that everyone is brushing this off, like there isn’t anything wrong with her, when it’s very obvious she’s extremely sick and needs immediate fluids and at least TPN. But no one in all of Australia will treat her.
It isn’t fair. I want more for my friend. I want more for everyone who has these diseases. People deserve to be treated equally.
And then there’s the AHCA…
I know it’ll probably never get passed in the Senate, but the House alone makes me furious. So many of my chronic illness friends will be losing their healthcare and that’s not okay. But I’ll talk about healthcare in another post.
Back to not looking sick.
I carry around a backpack. Inside my backpack are a pump, my tpn, a long tube that hooks up to my port, a huge stockpile of flushes, alcohol swabs, and batteries. I am tube fed. A tubie. Tubed. Whatever you want to call me. Am I ashamed? Why should I be? It’s keeping me alive. Without it I wouldn’t be able to survive. I eat, I throw up, I take laxatives, I cleanse my system of food that would otherwise stay inside of me for days or weeks. I get yelled at by my mother for the laxatives, but how else am I supposed to get the food out? This is just my life.
Another invisible disease is Ehlers Danlos Syndrome. Ironically, it’s Ehlers Danlos Awareness Month. To most people, they just think people wth EDS are flexible or bendy but it’s so much more than that. Its the ligaments, the joints popping out, the subluxations, the dislocations. Some friends I know wake up with joins out of place every day. That’s only happened to me once: I was actually in the goddamn hospital and my hip was out of the socket, and I fell over. While a nurse was in the room to transport me to my port surgery. They did absolutely nothing. As a friend said “One time we had to use a sheet to get my leg back in the socket. Afterwards, we called the hospital and told them. They told us I didn’t have to come in. If I told them my hip had fallen out and I also had cancer, they wouldn’t sent an ambulance.” The sad truth is that cancer pain is treated before EDS pain. EDS pain goes largely unnoticed/treated/cared about.
EDSers are called Zebras, because it’s so rare to come across an actual case in your medical career. It’s such a rare disease, and yet if you have dysautonomia, you’re very likely to have EDS. And it’s such a bitch and a half to have.
Zebras around the world, unite this month, in our invisible disease.
Chronic illness warriors, remember: we may not look sick, and that’s the reason why we have to advocate harder and harder for ourselves.
#chronicillness #ehlersdanlossyndrome #gastropareisis #dysautonomia #chronicpain #chronicfatigue #zebrapride #teamzebra #POTS