What Doesn't Kill You...
What used to define me no longer does…
I was a chronic illness sufferer.
A younger version of myself let that define me because it was all-consuming and hard. Doctors offices and therapy appointments felt like after school activities. It started when I was in fifth grade when my body became so weak and the pain became so severe. My wrists, my knees, my back, my neck… my mom would have to help me squeeze the toothpaste in the morning because some days I wasn’t able to.
That was the first time I felt confused in my body. I was 11.
Rheumatologists, neurologists, orthopedists… every test, every scan, no diagnosis… “It’s just growing pains” they’d say. Go back to physical therapy. I got really used to hearing that. But I was a kid and what did I know??…. I knew they were wrong.
The pain changed in my body throughout the years and as I regained functionality in some parts, I’d lose it more in others. But after awhile, I just had to get used to it. Middle school was hard. I didn’t have a dramatic or abnormal experience in any way, it’s just middle school and it’s an awkward and transformational time with puberty and friends and life. I was always very hard on myself and after getting my first “B” on a math test in eighth grade, I let the “I got a bad grade” voice creep in so loudly, I really started to feel like I failed. Depression, anxiety, self-hatred took over and I was so blinded by the sadness and struggle, I didn’t even notice that I had developed a severe eating disorder. I didn’t realize it until April 10, 2015 when I walked through the doors of the Eating Disorder Unit at a hospital in Princeton, New Jersey.
The doctor took me to the exam room and I changed into a gown. She did a head-to-toe physical and then took me into her office where she asked me to step on the scale. I don’t remember much of what she said because I was so sick at the time my brain couldn’t focus on much, but she said words like “osteoporosis”, “Infertility”, “organ failure”, “death” after she explained my diagnosis of “anorexia”.
In the moment, I was scared but also relieved to have a diagnosis, something I wasn’t used to. Something to make sense of all this suffering.
That night I cried over my plate of salmon and green beans, refusing to eat. After surrendering and drinking a supplement drink to avoid a feeding tube, I looked at my skin and bones body in the reflection of my window and cried myself to sleep.
I spent 18 days gaining weight and strength to enter what I didn’t realize was going to be a lifelong battle. The last ten years have been filled with lowest lows and triumphant highs. It’s been learning to shift the narrative from being a victim of bad things to a person who has depth, strength, resilience, and the power to endure pain and smile anyway.
Living with physical and emotional pain is not something they teach you how to cope with, because it is indescribable. To make it to the last day of tennis pre-season in high school only to excuse yourself because of the searing pain shooting up your spine, to travel with other teenagers only to have to find the nearest bench at every stop because your legs can’t keep up, to sit in class and try to pay attention even though your head feels like it may just fall off of your shoulders…
When I turned 18, I was so sick of hearing “it’s in your head”, “it’s growing pains”, “there’s nothing we can do”. It’s really easy for a doctor to sit in the exam room and give up on you, but you’d have to be really hopeless to give up on yourself. Now that I was an “adult”, I could do things on my own. I packed up all my medical records into a folder, creating what felt like a bible of trial and error, and marched into new doctors offices demanding to be taken seriously. Repeat tests, repeat scans, there was still nothing wrong. I hated when they said nothing was wrong, because that very clearly wasn’t true. What they meant was, I can’t figure it out.
I was so confused in my body. It didn’t feel fair.
After trying chiropractic which ended up being a huge waste of money and time providing the most temporary relief, I decided to see a new pain management doctor who suggested trigger point injections in my spine. This procedure was so painful but after the first round I felt some relief for a few months and started to have hope. Then I saw a new doctor to repeat the procedure about 6 months later. I left the office after ten injections and for ten minutes I could not see out of my left eye. Did they hit a nerve? Am I blind? I was terrified.
I was done getting injections in my spine. It’s too delicate. I’ll just suck it up, it’s nothing I haven’t done before. I’m fine.
I’m fine.
I’m always fine. Something I’ve learned over the years is to lie through my teeth when people ask “How are you?”.
I’m good.
Because the alternative would be, “There’s a shooting, burning pain in my back right now, my headache hasn’t fully gone away in four days, and in order to feel like I have any control over my body I’m starving myself because that feels like the only way to have any control”
I’m fine.
Invisible illness is hard because some months are okay and you get a glimpse of what normal life for normal people your age is like. But then, it hits you at once and you’re reminded that those moments are only temporary when you spend days in bed. It becomes so hard to decipher your struggles from your self. It can feel like it’s just who you are.
That’s what ten years of ups and downs, twists and turns, dead-ends and new doors will teach you… you can endure a lot of hard things, but those hard things, aren’t who you are. You are strong. You are resilient. You are brave. You have depth people can’t understand. You have willpower. You have compassion, empathy, kindness, unconditional positive regard because you know that you walk amongst many people who say, “I’m fine” while silently suffering.
The way my body looks may never please me. I’m learning to be okay with that. Shrinking myself so small takes the spark out of me. I can’t experience things with passion, learn with intention, connect with authenticity, and feel whole-heartedly. I am better when I’m whole and if that means I have to be a few pounds heavier, so be it, I guess…
There are ups and downs. There always will be. But now I get fries with my salad. I order pasta because it tastes good. I don’t skip dessert because it adds so much sweetness to my day. I get excited to travel and eat the local food. When my friends ask to get drinks, I cheers them with joy. I no longer deprive myself of moments that make me happy.
I am not a chronic illness sufferer. I suffer from chronic illness. I am not anorexic. I struggle with anorexia. And I will not let it define me, for I have so much more that makes me the complex, intense, kind, determined person I have become.
The last ten years have been filled with painful days, starving nights, hopeless moments, and intense fear. But, here I am living through it all and doing my best anyway. This anniversary is testament to myself and my journey as I continue to pave the way for a meaningful, fulfilling life. I’m overwhelmed with pride and 14 year old me would truly be in awe of the person I am becoming.
I’d like to say I do this all for her.
