Meet Emma Maxwell

We were lucky to catch up with Emma Maxwell recently and have shared our conversation below.

Emma, so good to have you with us today. We’ve always been impressed with folks who have a very clear sense of purpose and so maybe we can jump right in and talk about how you found your purpose?

I’ve always known that I want to help people, I just didn’t know how. That was until my health declined, and I felt so incredibly isolated. I found my purpose by becoming more vulnerable and vocal about my experiences that come with being a young person living with chronic illnesses. For so long I kept so much of my life hidden from the world. I’m someone who for the most part, looks “healthy” to the outside world, and hiding and masking my pain only brought more confusion and invalidation to myself, and those around me. I share my day-to-day while highlighting the conditions that have changed the trajectory of my life. By owning my experiences, and sharing them with the world to raise awareness and create community, I feel like I’ve taken back some power. I want to be the person I needed so desperately growing up.

Through sharing my story, I’ve recognized that there are so many people across the globe going through similar experiences, so many of which feel alone, and most don’t feel like they have a safe space to be honest about it. I’ve said from the jump, that if can share my story and make an impact on one person, it’ll all be worth it. I’ve found my purpose in sharing my life to raise awareness, spark conversations, break the stigma, create community, and push for change. My passion has become my purpose- and I’m forever grateful.

Let’s take a small detour – maybe you can share a bit about yourself before we dive back into some of the other questions we had for you?

My name is Emma Maxwell and I’m a 25-year-old chronic illness & disability advocate. I live with Endometriosis, Adenomyosis, Ehlers-Danlos syndrome, MCAS, POTS, among other chronic and invisible illnesses. I’ve found that creating my social media @endometriosisem has given me a platform to share my experiences living with chronic illness, raise awareness, and connect with the most supportive and loving community of people.

A bit of backstory- After 7 years from the onset of my symptoms, I had a surgery that diagnosed me with endometriosis. The 7 years leading up to my diagnosis were filled with countless medical professionals, doctors, nurses, specialists, teachers, family, friends, and even strangers, telling me that the debilitating pain that I was living with was “normal”. I was told that I was overdramatic, sensitive, looking for attention, that my pain was in my head, etc. I was also told repetitively that “period pain is normal”, everybody deals with it, and that I just didn’t know how to handle pain. My doctors pushed birth control and told me that it would fix all of my problems- it didn’t.

I eventually convinced myself that I was crazy. If the people I’m supposed to trust the most didn’t believe me.. maybe I really was making it up. I learned to mask my pain and went through a period where I simply stopped seeking help… until I couldn’t ignore it anymore. My health was declining rapidly, and deep down, I always knew what I was going through wasn’t “normal”, even if I there were so many people trying to convince me that it was.

I found myself in the ER more frequently, and saw countless doctors, OBGYN’s, and specialists who sent me home with little to no help. All it took was one doctor who believed me, told me he thought I had endometriosis, and scheduled me for surgery. My diagnosis confirmed that I wasn’t crazy. The pain I had been living with for so long was real. I was just diagnosed with one of the top 20 most painful conditions in the world, and as validating as that was, it started to set in that there was no cure for what I was going through.

At times it felt like I was living a double life because what most people saw, didn’t fully align with my reality. The smiley, bubbly, happy girl that people knew was actually in debilitating pain daily. So, I started my Instagram as a way to share the experiences I typically kept hidden behind closed doors with my friends and family. I wanted to share the good, the bad, and the ugly. I craved understanding because nobody in my life, as much as they tried, understood what I was going through. I wanted the people that I cared about most to have insight into the things I kept hidden for so long and to be a space to share reliable information, because endo is filled with so much misinformation. At the end of the day, how was anybody supposed to understand what I was going through and learn to best support me if I wasn’t even being honest with myself?

My page also served as a space for me, like a journal, to look back at when I inherently gaslit myself into thinking I was just being dramatic. Hmm, it’s almost like all those years of people telling me I was crazy, my brain was rewired to question and belittle my experiences.

To my surprise, I started to connect with people from around the world. As the community grew, it opened my eyes to the fact that the experiences I thought I was alone in, were far too common across the globe. This drove my passion to raise awareness beyond my immediate friends and family. I wanted to share my experiences to let others know they’re not alone, that they’re not crazy, and that even though your doctors may not believe them, they know their bodies best and deserve answers and care. I wanted to become the person that I desperately needed growing up. So I share the good, the bad, and the ugly with the world in hopes that it will raise awareness, spark much-needed conversations, break the stigma, and help others feel more supported on their journey.

Social media has been a jumping point for so many incredible opportunities. I’ve created campaigns to share stories from around the world. I work with foundations to raise awareness. I get to work with companies that help me. I’ve hosted in-person community events. I’ve even met some of my best friends through the community, who I’ve also hosted events with.

The community has grown into the most loving and supportive community I’ve ever had the opportunity to be a part of. The chronic illness community is truly a force to be reckoned with. I’m forever grateful to be surrounded by people that make me feel seen and that continue to push for change. I hope to continue pushing for awareness and creating change.

My passion has become my career.

There is so much advice out there about all the different skills and qualities folks need to develop in order to succeed in today’s highly competitive environment and often it can feel overwhelming. So, if we had to break it down to just the three that matter most, which three skills or qualities would you focus on?

Three qualities, skills, or areas of knowledge that were impactful in my journey-

Learning to advocate for myself- Learning to advocate for myself was something I was never taught, but something I was forced to learn through the years. After years of people invalidating my experiences, I learned that nobody was coming to save me, so I had to do it myself. I educated myself, learned to document my experiences, and how to speak up for myself, even if it was uncomfortable and my voice was shaking. Being your own biggest advocate is incredibly important when it comes to your health. You know your body best. Never let anyone convince you otherwise. You’re not difficult or rude for standing your ground. If people aren’t willing to listen, get a second opinion, a 3rd opinion, or even a 20th opinion- whatever it takes to get the care you deserve.

Vulnerability- Being vulnerable has opened up my world. It can feel uncomfortable, but it’s allowed me to connect with people on a different level and understand that even though my experiences felt isolating, I wasn’t alone. For so long, I convinced myself that I was the only one going through what I was going through, so I didn’t let people in. Being vulnerable has healed parts of me I didn’t realize were possible. With that, I’ve also learned to only share the things I feel comfortable with. You don’t owe anyone an explanation. It’s not your job to make sense to people.

Community- Finding community is everything. Finding safe spaces where you feel free to be yourself, without filtering or masking, is imperative. I didn’t know there were communities like that out there. Find your people. Submerse yourself in community whether it’s online and/or in person.

All of these things came to me with time, and I’m still learning. There’s no “right way” to navigate life, but for me, these three things have helped me to get to where I am today, and I’m so grateful.

What do you do when you feel overwhelmed? Any advice or strategies?

Navigating life while living with chronic illnesses and being disabled can feel incredibly overwhelming. For me, I’ve found that talk therapy has been very helpful. The mental impact of being chronically ill isn’t spoken about enough. Therapy has helped me with identifying and releasing heavy emotions, working through difficult situations, and being kinder to myself and my body.

Take moments for yourself. Slow down. Allow yourself to rest.

I’ve created a list of things that bring me glimpses of joy to look back at when it’s hard to see the light at the end of the tunnel. Journal. Go for a walk. Talk to a friend. Do some breathwork. Light a candle. Take a bath. Go for a ride. Do some gentle yoga in bed. Get crafty. Sit in the sun. Whatever it is, carve out time to do things that make you happy.

And of course, as I’ve said before, submersing myself in the community has been tremendously impactful. As much as I’d never wish this on anybody, it helps to connect with people who relate and remind me that I’m not alone.

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Image Credits

first photo was taken by @heatherelliephoto

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