Living with endometriosis
Emma’s story
“Aren’t you exaggerating?”, “You don’t look sick” – phrases that many with invisible illnesses like endometriosis hear too often.
Living with conditions that others can’t see comes with a wave of misunderstanding and a serious lack of empathy. We spoke with someone who’s breaking the silence and raising awareness with determination and resilience. This is Emma’s story:
Meet Emma
After seven long years of being dismissed, doubted, and told she was just being “dramatic,” Emma finally got a diagnosis: endometriosis. Now, she’s on a mission to make sure no one else has to feel unheard or unseen the way she once did.
Emma is a passionate advocate for endometriosis awareness – speaking up, standing strong, and reminding others to trust their gut (because it’s usually right).
And when she’s not championing change? You’ll probably find her outside with a paintbrush or pen in hand, letting her creativity roam free, or getting lost in music, strumming her guitar.
The journey to diagnosis
“I was being repeatedly told that what I was going through was “normal”, that I was just being dramatic, or that I didn’t know how to handle pain.”
It took seven years from the onset of my symptoms to finally be diagnosed with endometriosis. Those years were filled with countless doctors, ER visits, specialists, procedures, and being repeatedly told that what I was going through was “normal,” that I was just being dramatic, or that I didn’t know how to handle pain.
Before my diagnosis, I was fully convinced that I was crazy. After years of searching for answers and being met with medical gaslighting, I started to believe maybe I really was making it all up.
Never heard about ENDOMETRIOSIS?
Endometriosis affects at least 1 in 10 people assigned female at birth and is a full-body, systemic disease, not just “bad periods”, which is a very common misconception.
Endo is one of the top 20 most painful medical conditions in the world, yet most people have their symptoms dismissed, which results in an average of a 7-10 year delay of diagnosis.
It’s been found on every major organ, and although there are treatments like excision surgery that can help manage symptoms, endo currently has no cure.
Even though you often can’t see it, its impact is very, very real.
Someone you know has endo, whether you know it or not. It’s important to go out of your way to educate yourself through reliable sources and learn more about individual experiences, because most of what you read online is riddled with misinformation, which only perpetuates medical gaslighting, lack of care, education, and funding.
Educating yourself and others makes a difference.
My daily life
“To most people, I look happy and healthy, but in reality, I’m doing everything I can just to make it through the day.”
Even though I know I’m so much more than my diagnosis, endo affects every aspect of my life. My pain can shift in seconds, so I’ve had to learn to constantly adapt. That unpredictability creates a lingering anxiety – will this food trigger a flare? Can I recover after seeing friends? Should I avoid planning anything around my period?
And even when I’m doing everything “right,” the pain can still hit out of nowhere.
I’m always adjusting, always advocating for myself. And still, I often feel like I have to prove my pain – to doctors, to peers, even to strangers. After years of being told this was “just part of being a woman,” I learned to mask my pain well. To most people, I look happy and healthy, but in reality, I’m doing everything I can just to make it through the day.
Sometimes, I still catch myself minimizing my pain – because the gaslighting I experienced at such a young age rewired my brain to question what I feel, even when I’ve had multiple surgeries confirming the damage inside my body.
My life looks very different than I imagined it would at 26. And while I could definitely do without the daily pain and anxiety, I still live an abundant life filled with love, support, and joy.
Endo has forced me to learn more about myself, build a deeper connection with my body, and get clear on what I will and won’t accept in my life. For that, I’m very grateful.
Using a mobility aid
“My dad gave me the tough love I needed. He reminded me that I deserved support, and that pushing through pain wasn’t proof of strength.”
Growing up, I was an athlete – lacrosse was my main sport, and I eventually went on to coach after high school. Even though I was already struggling with symptoms of endo back then – brutal periods, pain that sometimes made me sit out of gym or practice – I still pushed through. I never once considered a mobility aid. At the time, my pain wasn’t consistent, and I thought needing support like that just didn’t apply to me.
That mindset stuck with me for years. When I started using a cane after my first endo surgery in 2019, I was hesitant, convinced I was too young for one, and just being dramatic.
But my dad gave me the tough love I needed. He reminded me that I deserved support and that pushing through pain wasn’t proof of strength.
I started with a plain black cane from Walgreens and eventually decorated it with paint pens and gems to make it feel more like me. That was the beginning of building my mobility aid collection – and of unlearning the internalized ableism I didn’t even realize I carried.
In the summer of 2023, I bought a rollator last-minute before a trip to Seattle for a Taylor Swift concert. My pain was flaring, and I knew I needed more support. That rollator got me through the trip – but it was bulky, difficult to manage, and I needed my sister to help me lift it over curbs, up & down steps, take it in and out of the car, etc. I actually had my first panic attack in years from the stress of navigating it in a crowd. This was such an eye-opening experience for me.
This was the first time I experienced just how inaccessible the world is – and this was just one instance.
Getting my byACRE rollator honestly changed everything. It’s lightweight, easy to handle, and has let me do things I never thought possible – like get out of the house during my period. It’s brought me freedom, independence, and so much joy by allowing me to participate more fully in my life.
Now, I look back at younger me and wish I could give her a hug. I used to be so afraid of how people would perceive me, so much that I’d deny myself the support I needed.
It’s still confusing sometimes. One day, I might be dancing around, and the next, I can barely get out of bed without help. That’s the reality of living with a dynamic disability.
If you’re confused seeing me with a rollator one day and not the next – trust me, I’m confused too.
At the end of the day, my mobility aids allow me to do more of the things I love with more ease and less pain. Why wouldn’t I give myself that?
To everyone who’s newly diagnosed
“You’re doing your best. And your body is doing its best to keep you going. Celebrate your wins, no matter how big or small they may seem.”
I know it’s easier said than done – because I’m still learning this too – but be gentle with yourself. You know your body best. Even when you do everything “right,” flares still happen. That’s not your fault.
You’re doing your best. And your body is doing its best to keep you going. Celebrate your wins, no matter how big or small they may seem. You got out of bed and made it to the couch today?
Celebrate. You made it to the grocery store? Celebrate. You went on a hike? Celebrate. You prioritized rest? Now that’s definitely something to celebrate!
You also deserve support. You’re not a burden. Living with endo is a burden on you.
Surround yourself with people who listen and believe you. Not everyone will get it – and that’s okay. The ones who try to understand, who show up with care – those are the ones worth holding close. And if you outgrow people along the way, that just makes space for the ones who will love you the way you deserve to be loved. Therapy has been incredibly helpful for me to process this and put it into practice.
If you’re looking for a connection, the online community can be a great place to start. There are so many people sharing their stories, support groups, and spaces made just for people like you. It can feel incredibly isolating, but please know, you are never alone.
Follow Emma
Want to see more of Emma and how she shines a light on a condition that’s too often kept in the dark? Head over to her social media and follow along as she shares her journey.
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@endometriosisem |