Karen Lord, a renowned Pilates trainer and prominent wellness-world figure, is “in the business of putting people back together,” she says. But you may not know that she’s been struggling to put herself back together, all along the way, due to the chronic pain she lives with from endometriosis, a disease without a cure. Here, the celebrated healer talks about what it means to “keep quiet about my own brokenness, my falling apart,” while simultaneously getting (deserved) fame for her fitness and health prowess.

It started for me at 15. I ran out of class and into the weird partitioned bathroom stalls of my high school seeking privacy and a cold floor to lie on. I remember the pain being so bad that I was writhing around looking for comfort in my still growing and foreign teenage body. I stood on my head, reasoning that if this much pain can happen standing up, then surely upside-down could be a kind of antidote. It wasn’t. After an hour or so of the worst pain I’d ever felt, I ended up home in bed, shellshocked with Advil, rest, an electric heating pad—and the nurses and my well-meaning mother saying that cramps can just sometimes be really bad. The thing is, this was hell, though I didn’t know how to say it. I didn’t have the words, or the confidence past the comprehension that this was anything but normal.

I was a late bloomer, only getting my period that same year or the year before. I remember the songs that were on the radio at the time. I remember almost falling into a fryer the next year at my summer job at a seafood take out place (this was Massachusetts). My boss physically caught me and I ended up vomiting and bleeding and shaking and seeking the same cold on the outhouse floor of the rickety clam shack. Again my mom picked me up. Again I was in shock. Again I slept it off, shrugged it off. I went on with things, not feeling I had the right to question any of it. I had never been exactly normal and I think a part of me figured this was just another way in which I was so very different from the people around me. At that age you don’t quite get to choose.

I started having sex that year and a first trip to a gynecologist left me with a triphasil birth control pill that had both the promise of keeping a teen pregnancy away, which worked, and also the promise of lessening my cramps—which didn’t. I managed through detachment, like we do when we’re young and some things are too big and too painful, and we think it’s just the way they are. I had been a gymnast, a dancer, an artist, a singer, a tomboy, adventurous—and that all switched to more escapist pursuits like smoking pot, drinking crappy wine in the woods, and more teenage sex, the ultimate beautiful distraction. He was broken, I was broken, my family communication was broken, and we just got on with things.

I moved to New York City at 19 and I had a job as a model. I fainted during a shoot, and again I found myself in the studio bathroom seeking the cold tiled floor.

Here starts the sound-crushing, confidence-killing feeling. Knowing you can feel like you’re dying, and the ones who need to help you are convinced—and convince you—that it’s all in your head.

I had a job as an au pair in Tribeca. I fainted in the middle of the tiny triangle that is Tribeca Park. Vomiting, a group of kind people woke me up. I crawled to the house of the parents I worked for (pre-cell phones, I think I had a pager) and called my best friend to take me to the hospital. This was the first time. I didn’t think I deserved an ambulance. For bad cramps?

I was told to go on the pill (I was already on the pill) and that I was stressed. That some women have really bad cramps. They wouldn’t give me Advil at the hospital in the West Village. So it must be me. Here starts the sound-crushing, confidence-killing feeling. Knowing you can feel like you’re dying, and the ones who need to help you are convinced—and convince you—that it’s all in your head.

I started studying, making this my job. I learned that I needed an endocrinologist, and I found one. He asked me out to a club while I was sitting on the examination table. I squirmed, I declined, I wanted to fucking scream, I wanted to fucking punch the guy for asking me out while I showed up there, vulnerable, hopeful, seeking answers like my life was hanging in the balance. I don’t remember what I did. I do remember not getting answers.

So here’s how it happens, here’s how I experience an episode: It’s day one of my period. It starts to hurt. A radiating pain in my lower abdomen and then a white light and then a buzzing in my ears and then a crash when I fall down. I pass out and I wake up to pain that I can only describe to women as someone trying to reach into my body and tear out my uterus with clawed hands. To men I try to explain that I bet it’s kind of like if someone were to do that to their balls. I’ve had to explain it to male doctors that way. So many doctors still don’t know what this is.

So when I come to, I call 911. I’m vomiting and having diarrhea and at the same time I’m shaking, wincing, writhing, squirming, screaming. When the EMTs get there, one of three things happens: They think I’m on drugs, they assume I’m coming off of drugs, or they think I’m exaggerating. Or the best-case scenario is the usually male EMT/ firefighter is the one guy there who has a wife or a girlfriend he loves, and he looks at me, really sees me, and he says he’s so sorry. That his wife just had this happen last week and he knows it’s brutal. And that belief feels better than the usual responses I get, but I’m still certain I’m dying because logic tells me that humans just aren’t built to endure this much pain without death as an eventuality.

Then the stretcher, winding through the corridors to the elevators, past my doormen, who are my friends but can’t register what’s happening. The hospital ride is the worst because it’s the time of the most pain. I ask for oxygen and they tell me to lie flat—but I can’t because I’m writhing. They get mad. I get mad, I swear a lot. I’m so pissed that they aren’t moving fast enough or taking it more seriously—go!

I get to the hospital. I’m skinny, so they think I’m a drug seeker. I get an IV and an Advil, which I can’t tolerate anyway. Sometimes a pelvic exam, which is just not what you want in an ER. They say to see a gyno, and refer me to one who’s affiliated with the hospital. They send me home.

Home. Drained. Apologetic. Embarrassed. It’s me—I drink too much, I stress too much, I’m living life wrong as a wild child and a free spirit in NYC so it’s all my fault. Plus it’s all in my head. I’m dramatic. I’m failing. I’m broken. I’m different than everyone. Then I forget it until it happens again.

***

I see every specialist. Craniosacral therapy, reiki, a psychic, a weird celebrity doctor on Long Island who said I should gain 20 pounds because I was a vegan and that elephants are also vegan and have high body fat—so therefore I’m too skinny because I don’t have the body fat of an elephant. Gyno after gyno.

The last one was so frustrated I kept coming back for years with the same ailment she said, exasperated, “Karen, what do you want me to do?” And: “Try yoga.” I was a Pilates enthusiast at the time—no yoga in the world can manage the kind of pain I was getting used to as my normal. I left in tears. This time it was Union Square, but I got used to crying everywhere in the city. I was in tears a lot. I was dark, I was depressed, anxious, I was in therapy, I felt defeated. I felt hopeless, powerless. Way broken.

I had a beautiful boyfriend who ran from his job on Spring Street to the Lower East Side in the snow when I called him in agony saying “the thing” was happening. I had a beautiful best friend who did the same thing one evening—she was my neighbor in the East Village and I opted out of an ambulance, instead asking for my journal so that I could log my pain in real time, minute by minute, to show doctors later, which I thought would help them to listen.

It was only six years ago, the first time I got relief in a hospital. The first time a doctor knew my pain was real. I will never ever forget the sympathy in her eyes.

Another time my sweet 12-year-old dog licked me awake after I had passed out in my bedroom reaching into my drawer for a Vicodin as I felt it coming on all at once. She was so diligent—she didn’t eat the pills that had fallen around me on the bedroom floor when I fainted and bashed my head on the foot of my bed frame. Thank god. She licked my face and fingers until I woke up and I called an ambulance. Different boyfriends, different best friends, different dogs, same situation, no answers.

Joy came one day when “the thing” hit, and I ended up at the right hospital at the right time with the right female doctor on duty and she understood it immediately and gave me morphine. That was the best feeling. Not just the thuddy, muddy slow buzz of the drug but the fact that this would be the first time I was believed. That my pain was acknowledged. The shitty thing is it was only six years ago, the first time I got relief in a hospital. The first time a doctor knew my pain was real. I will never ever forget the sympathy in her eyes. Thank you thank you.

While I was in Pilates school we went around the room: why are you here, what do you hope to achieve, the usual get-to-know-you stuff. When it was my turn I said I wanted to learn anatomy and understand my body better because I have severe dysmenorrhea (a big term for bad cramps). That was the weirdest answer in the room.

That year I was in the best physical shape of my life. Strong, invincible—feeling very much alive. Imagine practicing Pilates every day for about six hours for over a year. I felt superhuman and I’d never been so strong. Then “the thing” happened, and I missed advanced training weekend because I was in the hospital. But the same year, I was diagnosed as having endometriosis. I was so excited because I thought that with a diagnosis came a fix. No fix. Anti-anxiety medicine, antidepressants, Vicodin, codeine—the anti-anxiety meds stuck, but nothing else worked. Turns out painkillers don’t help this kind of thing. Or at least they didn’t for me. It continues. Too many times to mention.

Fast forward to finding the very best doctor in NYC through a friend and a Pilates client. He’s kind and funny and so smart and known for sports medicine. We had a great rapport and he always listened, and he was worried. He wanted me to have my uterus removed because he didn’t want me to go through this anymore, he also knew how bad the pain was. He knew I couldn’t keep pills down, so I was prescribed fentanyl patches (AKA a strong opioid). That was the second best feeling because he cared, he acknowledged and he treated my pain in a compassionate and atypical way. Just what an atypical person needs. I’ve never used the patches, though, because I’m afraid they’ll kill me. That killed a lot of people last year.

***

So my career is getting bigger and I have a big studio with my name on it, a team of 12 and celebrity clients, a publicist, and a waiting list for my services eight months long. I’m grateful and I’m lucky, but I’m bailing a lot because as all of this gets bigger, so does the stress. And stress feeds the disease. I had six major episodes in the first three years of my beautiful new dream studio, the worst being one April when there was some really stressful stuff happening with the building my studio was housed in. I was sick with the flu, too. I woke up to awful cramps on top of it and headed to the kitchen to eat some crackers (I need food in my stomach in order to take the meds I take for the pain). I didn’t make it. I slammed into the wall, waking my fiancé (ex-fiancé now) at the time. I had fainted from the shock of the pain and smashed my head and shoulder against the wall of our pretty Tribeca apartment ending up on the ground. She held me trying to wake me up. Our puppy Wolfie was licking me as she was shaking me awake and shaking me to stay alive. I could hear it but I could also hear my body telling me to let go. Just stay asleep. Let go. Thank god she was there coaching me back to life while calling 911 because I’m certain she saved my life that night. She and Wolfie and my not giving in to sleep saved my life.

What do you do when you’re a top trainer, a fitness personality, a “guru” and your body betrays you? Are you still valid, strong, healthy?

The next day I was more worried about her then myself. The toughest person I knew looking like she’d seen a ghost, telling a friend she’d never seen me so fragile. A word that still makes me cringe because I feel like my fragility in that moment changed so much.

That was my longest hospital stay, I had a room to myself and wonderful nurses whom I kept telling, “I love you.” And I meant it because I really felt like I had come so close to the end. I was so full of like and love and morphine, but mostly love—I could see life so clearly. This push and pull had taught me so much about it. I loved my nurses. I remember the next day saying boldly, “I love life.”

Then it happened again. Exactly a year later in Los Angeles. A place so healthy that I felt protected, and half-believed it would never happen again. And then a few months later. And then just yesterday, making this piece past deadline.

What do you do when you’re a top trainer, a fitness personality, a “guru” and your body betrays you? Are you still valid, strong, healthy? I say yes. I’m strong because I’m still here. Still living through this, with this. I’m lucky because my clients understand and send me flowers, and messages of love instead of words of anger and disappointment when I have to take a week off to heal. I share this with them. I tell them the truth. We share so much, it’s the nature of what I do.

But the darkest side is that this disease kills. Someone I followed on social media recently took her own life because the pain and shame and darkness and disruption was too much for her to bear. When I heard, I wasn’t shocked—I understood. This disease kills. It kills lovers when they see you as fragile, it kills careers when you can’t show up, it kills friendships when you come off as flaky about plans when really you’re just terrified of the thing happening and it’s so hard to make plans. It killed my family for a while because they didn’t understand my anger. It breaks women down. It kills dreams and confidence, as chronic pain will do.

I’m lucky I’m a particular kind of fighter. I’m lucky that I have a fierce creative entrepreneurial spirit that at times seems driven by a force more determined than fire. I get shit done and I do it well. Despite having half the healthy time of most people. I’m lucky I’ve walked, stumbled, crawled through the fire over and over without remembering how badly it burns. A self protection, a sheer determination, a will to not just live but to really live.

I’m lucky that after all the tests are run in the ER they tell me I’m the healthiest person they’ve ever seen. I mean except for this, right? Right. Eat a steak, the last doctor said. I asked that doctor to stay far away from me. A blood panel just showed perfect iron levels and I’m a devout vegan and even when I wasn’t this shit still happened.

So, the broken ones are my beloved. I’m broken. And I still un-break people for a living. As a passion. I’m really good at it.

This endometriosis has given me more love, grace, and empathy than I had before, and I was born with lots of it. I want to share this to start a conversation. How about several conversations? First, that you never ever know what another human being is going through. Second, that If you’re going through shit, too, it’s is okay to talk about it. The more we talk, the more we build community by sharing information with each other. We can help each other. We might even keep each other alive. Let’s try, my beloveds.

Find out more about endometriosis, like what foods can ease the symptoms in some people, the one thing most people get wrong about the condition, and what you need to know about the latest research.