Fall Seven Times, Stand Eight: How I Learned to Ride the Waves of Chronic Illness

If someone had told me ten years ago that I’d be sitting here today writing an article like this, I probably wouldn’t have believed them. But then again, life has a funny way of surprising us, doesn’t it?  

First things first: I should introduce myself. My name is Jessica, but you can call me Jess! I’m a brand strategist, storyteller and Squarespace expert. I get to spend my days empowering other women to achieve greater success in their businesses through strategic brand design and creative storytelling. How fun is that?

There’s more, though: I’m also an endometriosis and invisible illness advocate. Let me tell you a little something about that.

Chapter One: But You Don’t Look Sick

I was diagnosed with advanced and extensive endometriosis in 2011 after six years of pain and two years of confusing, humiliating trips to various doctors. Before my diagnosis, I lost friends and got dismissed by several doctors who found my collection of symptoms too bizarre and disconnected to possibly represent something real. That’s the trouble with invisible illnesses: They can’t see what’s wrong. They can’t see that you’ve summoned Herculean strength to grit your teeth and bear the pain while trying to look engaged when they tell you about that one thing your coworker said during today’s staff meeting. It’s nobody’s fault -- You just don’t look sick.

And while most would consider that kind of Herculean strength to be, well, a strength, it can be the achilles heel of someone like me.

If you don’t look sick, and you don’t act sick… Are you really sick?

But all along, I had an aggressive case of endometriosis. Endometriosis, to put it really briefly, is when cells that are similar to the lining of your uterus implant themselves somewhere in your body that they shouldn't be, and then shed cyclically each month along with your period, causing internal bleeding.

Ouch.

Chapter Two: Becoming A Purple Unicorn

As it turned out, my reproductive organs were fused together by the disease, and I had endometriosis on my bowel and bladder too. At that point, I was so sick that I lived every day with a different assortment of various symptoms such as nausea, vomiting, cramping, headaches, dyspareunia, pinched nerves, a numb leg, grinding fatigue, back pain, abdominal pains that made me feel like a human skewer, and even incontinence (which I'm sure is embarrassing at any age, but particularly horrifying in your early twenties).

Thanks to my incredible parents, I got to be one of the lucky ones. I saw a top specialist who surgically removed almost all of my existing endometriosis, and my quality of life improved tenfold for several years. But, unfortunately, endometriosis is a lifelong disease, so mine came back - as it always will. Now, I represent the 0.5% of women with umbilical endometriosis. If I’ve done my math correctly and the researchers reported these stats correctly, there are only a few hundred of us in the world.

Umbilical endometriosis? What’s that?

Oh, it’s fun stuff. When I get my period, I bleed out of a marble-sized tumor (a rare, external endometrioma) that fills what used to be a cute, normal belly button.

Basically, I’m a purple unicorn. Cute, no?

It’s bizarre, I know, and it only affects 0.5% of women living with endometriosis — which makes my journey an isolated one. And while some may perceive me as a strong, confident woman, I have to admit that I’ve struggled to accept this part of my life without shame. I don’t remember the last time I wore a bikini. I’m scared that people will stare, or that I’ll make them uncomfortable. And before I met my husband, my dating life was burdened with the mental trapeze of, “How soon is too soon to tell him about this? How late is too late?” and in reality, there was never a right answer. I mean, let’s be real — there’s never a good time to say, “By the way, I have a tumor in my belly button that has a period, and also I might not be able to have kids."

So, from that perspective, it's hard not to let a disease like endometriosis get you down. I may not be able to have kids of my own and I'm in some kind of pain or discomfort almost every day, but I can’t even begin to express how important it is to push past the pain and insecurity to learn how to live your best life in spite of it all. Because at the end of the day, we are confined only by the walls we build ourselves. (That’s a quote from Andrew Murphy, by the way. Wise guy!)

Which brings me to...

Chapter Three: Becoming A Wave-Riding, Disease-Fighting Purple Unicorn

People don't talk much about the grief that comes with the onset of chronic illness, but it is so, so real. Betrayed by our bodies and robbed of autonomy, we must come face-to-face with new, hard truths: We learn to set aside our pride and ask for help with basic tasks, advocate for ourselves within a backwards medical system, and acknowledge that our 100% will only ever be everyone else's 70%. We learn that the path we walk in life is scarcely populated and often lonely, and to accept the loss of our old selves.

However, if we allow ourselves to see the light at the end of the tunnel, we can also learn that the power to choose strength in the face of adversity is something we will never lose. Chronic illness can't take away choice of mindset unless you let it. And why on Earth would you? It doesn't deserve to take another damn thing! If you're struggling to adapt to life with chronic illness, I have this to say: Whether you allow your disease to define and confine you is entirely your choice, but I hope you choose to embrace your strength and get back up each time it knocks you down.

Fall seven times, stand eight.

For me, this mindset shift happened when my endometriosis started to come back. I decided that I was sick and tired of feeling and acting sick and tired! When I was first diagnosed with my disease, I found support groups online. And to be honest, so many people in these groups had lost so much hope. It was like a vortex of negativity and self-pity, and for a while, I embraced it. But I couldn’t shake the feeling that I didn’t want to be that person my whole life — the person who becomes so consumed by their illness that eventually it defines their whole identity in a negative light. I didn’t want to be known as a person who was always sick, always tired, and always negative. I wanted to be known instead for my strength, perseverance, tenacity and greater contributions to the world. When I came to that realization, I took a step back and decided that I would never, ever let my disease own me.

In other words, I’d rather ride the waves of chronic illness than let them drown me.

I also realized that even though I represent less than 1% of the women living with the same rare mutation of my disease, I’m not the only one. That means there are women out there who are walking the same path as me, feeling isolated and embarrassed to be open about their truth because it’s uncomfortable to talk about, see, and acknowledge. Would you want to live like that? Would you want your daughter to live like that? I really, really don’t, and I would give up ANYTHING to give even just one woman or girl the confidence to know that she is not alone; She is not deformed; She is not gross. She is simply uniquely made, and that is not something to be ashamed of. And once I realized that, everything about the way I perceive my disease changed.

These days, I make conscious choices daily to be a positive, supportive role model for other women and girls living with chronic illness. I want them to know that it’s okay to have bad days. But more importantly, I want them to know that they are powerful beyond measure, and more than capable of creating a life full of happiness, success and fulfillment.

It starts with learning to ride the waves.