If you had told me two years ago that I was going to be a demo babe for the be.come project, I would have thought you were nuts. I was too busy being sick, very sick, horizontal on my parent’s couch, calling Social Security, watching “Shark Tank”, and holding on tight to Starr the dog. At 27, I could barely lift my head or feed myself. I felt like a stranger in my own body.
My job was working me to death. Literally. Like many start-ups, it was an extremely toxic environment. I was having multiple panic attacks a day. I couldn’t stop running to the bathroom. I lost 30lbs in less than two months. One morning, I got up for work, only to find that my body had other ideas. It had completely broken down – I couldn’t walk, move, or stand. I couldn’t eat or drink anything without it coming back up again. The vice-grip of pain was relentless – I was howling, shaking, and crying. I was scaring the shit out of my roommates and anyone within a 5-block radius.
My dad picked me up and took me home. After 15 years of remission, my Ulcerative Colitis had come back. Ulcerative Colitis (UC) is an autoimmune disease that causes your body to attack your large intestine. I call it “open-faucet-syndrome” – everything comes out of everywhere. My days were a kaleidoscope of extreme fatigue, nausea, vomiting, more vomiting, loss of appetite, cramping, chronic pain, more pain, muscle weakness, insomnia, depression, anxiety, and bleeding out of my butt. I had gone from a “healthy” working woman to a Skeletor-impersonator overnight. It felt like hell. It was my first flare-up as an adult and everything changed: I lost my job, my income, my health insurance, my apartment, my autonomy, and my dignity… (not that I had that much to spare) I was exiled to the ever-feared, little known, DoctorLawyerBureaucratTown, USA. I found myself in a hellscape of Social Security Disability, food stamps, and endless doctors’ visits. For the first time in my adult life, I was in way over my head. I felt like a kid again.
This wasn’t my first rodeo. I was first diagnosed with UC at age six – it was the worst juvenile case the doctors had seen. They decided to remove my entire large intestine over the course of three surgeries, which as a six-year-old, I was totally unprepared for. They left me to sport a colostomy bag – the hottest elementary school accessory. (Next to a Lisa Frank trapper-keeper.)
Growing up, it was easy to carry an Irish-Catholic-style shame around my illness. With my scars, I thought I looked John Hurt post-“Alien”. I hated talking about myself. I hated looking at myself. I made myself as small as possible. I’m terrified people will get fed-up and decide their life is easier, less complicated without me. When you’re sick, it’s easy to feel like a burden.
Usually when I talk to people about my illness, I get: blank stares, or cancelled dinner plans, or: “But, you look AMAZING!” “You’re lucky you’re so skinny!” “Use it for your art.”
And to that, I say, “Thank you. I’m wasting away!” Mortality, am I right? It really freaks people out. God forbid my illness brings you a taste of your own fleeting time on this earth, Barbara!
Having an invisible illness is rough. If people can’t see the markers of illness on the outside, it’s easier to dismiss. The burden of proof is on me to explain myself to doctors and peers. When I do get through to people, I hear things like, “You’re so brave” or “You’re a survivor.” That drives me crazy. While those things may be true, I never really had a choice in the matter. That language is another was to dismiss my experiences by tokenizing me as a hero. It robs me of my full humanity. Deifying survivors maroons us on high pedestals we didn’t even ask for. Then, when we can’t live up to the expectations of imposed hero status, we’re labeled as bad victims. It can be maddening. I don’t want to explain myself in circles. I want to be seen exactly as I am. Honestly, the sexiest thing someone could say is, “I’m sorry. That sucks!”
Although I am great at taking care of myself on paper, I am not great at taking care of myself in practice. Making a commitment to yourself when you’re sick can feel like the worst. You have to “relax” and “listen to your body.” My body is always screaming, so what exactly am I supposed to be listening to?
Being sick is a full-time job that you’re not paid for. I’ve been doing this my whole life, so at this point, they should give me a corner office and a 401k. I’m on the phone all day with the government, with insurance, with the state, with my pharmacies, and with my bank just to get my basic needs met. I have to advocate for myself because my life depends on it. Some days, I don’t leave the house. Some days, the only thing I’ve done all day is shower, or argue with my pharmacy for hours so I can get the medication I need to not die. Some days, I feel like I’m not doing anything with my life. Illness, money, and politics are often too gauche to talk about. It’s not really lively party conversation. It’s lonely. It’s isolating. It’s cripplingly frustrating. This lifestyle doesn’t leave room for a day job, a disposable income, going out, or self-care. Some days, I am stressed to the point of catatonia.
I found the be.come project about a year into my flare-up. I was serving Bambi-on-the-ice realness – a spindly woman who could barely lift a gallon of milk without having to lie down. I had moved off of my parents’ couch and into my small room in Brooklyn, and I was desperate to bring fitness back into my life. I asked the Instagram gods for advice and they led me here. I could try before I buy and the monthly fee was inexpensive. I could think of a million excuses not to (I really like being horizontal), but I knew I had to make a commitment that I would show up for myself 1-7x a week.
I’m so glad that I did! Whenever I feel small, depressed, burdensome, or angry, I leave it all on the mat. It doesn’t matter if I can’t do all the moves or if I take the modification – I am doing something for me. I’ve gotten stronger, scrappier, and more confident. Bethany’s energy is contagious and after 25 minutes, I feel like a new woman. I even workout naked.
Through my illness, I’m still learning how to listen to my body. That’s really hard. Especially when I’d rather be doing anything else. My body says a lot of seemingly boring things like, “Let’s lie down again,” “Sorry, I can’t come out tonight,” and “Don’t eat that popcorn, you bitch.” It can be frustrating when I think I am healthier than I actually feel. My body doesn’t always do what I want it to do. I can’t always eat what I want to eat. My diet is extremely limited (I still mourn the loss of coffee). It doesn’t always feel the way I want it to feel. That’s okay. I am working on being more open and honest, telling the people I love what is really going on, asking for help, and asking for help again.
Every day, I am working on defining myself outside of my illness. I am an actor, writer, content producer, and patient advocate living in Brooklyn. I’ve developed and presented lectures for medical students on proper pediatric bedside manner. I’ve written a 30-minute TV show about my life with a malignant brain tumor called, “Sick!” My first YouTube sketch, “Flashmob Breakup” went viral. I’ve worked on content advocating for people with disabilities. With all that is going on, it is hard to find even a sliver of a silver lining. But, I’ve learned to cook. I have a group of friends that are my people. I have an amazing and supportive partner. I am so honored to be a demo babe for the be.come project.
I want to use my experiences to help others feel seen, heard, and validated. Advice from a Gutsy, Gutless Woman:
Be good to yourself. We like you. Don’t wait for a doctor’s office to call you. Their offices are busy with patients, non-stop faxes, and insurance company phone calls. Be proactive.
Friends and family don’t always know how to help. Just actively try! Flowers, a home-cooked meal, or a visit go a long way. Text messages don’t count. Seriously.
If you have a disability or medical condition, tell your employer. Trust me! Speaking up may open the door to accommodations you may not have known about. Know the company’s sick-leave and time-off policies! It is illegal to be fired because of your disability, so read up on Family Medical Leave Act (FMLA) and the Americans with Disabilities Act (ADA)!
Open every envelope that comes in with your name on it! Keep all medical records and receipts. Nothing good comes from ignoring your mail.
Illness can strip away the shiny parts of your personality. Cut yourself some slack. That’s okay! It’s perfectly fine to feel angry, sad, tired, very tired, scared, joyful, goofy – whatever! Just be you. Make sure you surround yourself with things and people that remind you how amazing you really are.
Slay. Share. Repeat. We’ve got this.
thanks sarah for sharing! you can follow @sarahsixt