Unstoppable: How Lexie Foley Has Redefined Success While Navigating Society With Chronic Illnesses — Interstitial Cystitis
The world is not accessible to people with disabilities in general. It is so important to use your privilege to recognize and help change current barriers facing people living with any limitations, both physical and mental.
As a part of our “Unstoppable” series, I had the pleasure of interviewing Lexie Foley.
Lexie Foley is a 23-year-old chronically-ill woman who, against all odds, graduated with an undergraduate degree in May 2021. She is now pursuing her Masters Degree in Nonprofit Management and hopes to one day open a nonprofit theatre company for kids with disabilities. In everything she does, she advocates for herself and others to make our world a more kind, inclusive, and accessible place for all people.
Thank you so much for doing this with us! It is really an honor. Our readers would love to get to know you a bit better. Can you share your “backstory” with us?
Thanks so much for having me! My name is Lexie and I am a 23-year-old woman who lives with chronic pain due to my chronic illnesses — interstitial cystitis (a chronic condition that causes debilitating pain in my abdomen), endometriosis, chronic ovarian cysts, vulvodynia, IBS-C, chronic bronchitis, and other still undiagnosed conditions. This disease generally isn’t diagnosed until someone is between 35 and 50 years old, so it was even harder to navigate along my health journey. As a young woman who looks even younger, I found myself needing to convince both my family and doctors about the severity of my illness. And even when I did, doctors continued to misdiagnose my illness, which meant I wasn’t always getting the right treatment. It took a lot of research and advocating for myself to get me to this place in my health journey where I feel in control and empowered by my decisions.
Do you feel comfortable sharing with us the story surrounding how you became disabled or became ill? What mental shift did you make to not let that “stop you”?
I’ve barely known a time in my life when I wasn’t dealing with pain. This pain primarily exists in my central abdomen — I remember having this pain as a kid and doctors would blame it on other things like period cramps. While my doctors finally correctly diagnosed me and began treating it, none of the treatments addressed the pain I experienced, and it got worse year over year.
During my junior year of college in 2020, the pain became so unbearable that I couldn’t even walk to the bathroom without help. It was then that I started to think that I was never going to get better — life sucked in that moment, and I was constantly exhausted of being in pain. I saw my pain start taking a toll on my family and loved ones, which made me realize that, if not for myself, then I had to find a way to have this pain treated for them. During one of my doctor’s appointments, I noticed a poster for one of Abbott’s spinal cord stimulation (SCS) devices that said it could provide relief for people living with chronic pain. That led me to seek out doctors who knew about this treatment to see if this could work for me.
Can you tell our readers about the accomplishments you have been able to make despite your disability or illness?
My recent chronic pain treatment has allowed me to achieve many milestones in my life that I initially thought were unattainable for me. That includes graduating from my undergraduate program and pursuing my master’s degree in nonprofit management. It also includes exciting life moments like moving to Chicago and being in a long-term relationship with my partner. It might sound trivial, but I am now able to walk around places by myself and ride a bike along Lake Michigan — things that I’d never thought I’d be able to do with my chronic pain.
What advice would you give to other people who have disabilities or limitations?
Believe it or not, there are really good doctors out there who believe in your pain and symptoms, and are willing to work with you to find the best treatment for your illness and disabilities. I had to go to between 10–12 doctors just to get my initial diagnosis correct. It is so important to advocate for your own healthcare and your own body. You’re the only person who can truly detail what you’re feeling and no matter how granular you get with describing your illness or dumbing it down to its simplest form, it’s important to say it. If people or doctors are uncomfortable with the details and explaining your pain or illness, that’s on them.
None of us are able to achieve success without some help along the way. Is there a particular person who you are grateful towards who helped get you to where you are?
So many people have helped me along my health journey — different people in different moments. If I had to narrow it down, I’d say my partner and my parents have been super instrumental in their support and I’m so thankful to have them in my life.
My partner was physically here for everything and saw me at my absolute worst. Despite not growing up around anyone with a disability or chronic illness, he has always been there for me, asking questions and trying to understand my experiences so he can help and support in any way he can.
My parents have also been there throughout all my experiences and have been with me on this journey from the beginning. They’ve really helped me with the mental aspects of living with a chronic illness. My dad, in particular, has always listened to me vent my frustrations, validating my feelings while pushing me to do everything in my power to overcome my challenges.
How have you used your success to bring goodness to the world?
I’m trying to make the world a better place by talking about what I’ve dealt with, hopefully helping to normalize conversations about our bodies and our pain, so others know they’re not alone. While I was growing up, many people knew I was sick but never addressed it. Now, I try to be as open as I can with how I’m feeling — I talk about my bodily functions all the time and it’s from that openness that I help others learn how the human body is meant to function and if health experiences are normal or abnormal.
Also, as I’m still pursuing my master’s degree, it is my hope to one day start a nonprofit that helps kids with disabilities get into theater and the performing arts. Theater was a huge part of my childhood and I want to bring the joy and love that I have for it to people of all abilities.
Can you share “5 things I wish people understood or knew about people with physical limitations” and why.
My five things I wish people understood are:
Disabilities aren’t always visible and can’t be measured.
The world is not accessible to people with disabilities in general. It is so important to use your privilege to recognize and help change current barriers facing people living with any limitations, both physical and mental.
Trust those you love when they tell you they’re sick/in pain/need help/etc. They always know their bodies better than the doctors do.
There is harm caused when the medical community — including doctors — do not believe the symptoms expressed by disabled and chronically ill people, which I’ve unfortunately experienced several times in my life. It’s important for the medical community to believe patients and in the experiences they are describing when they come to them asking for help and seeking treatment.
Be kind to everyone. Some of the “happiest” people are fighting battles you couldn’t even imagine. Just be kind.
Can you please give us your favorite “Life Lesson Quote”?
I love Brené Brown and think she has some great quotes. My two favorites are:
“Owning our story can be hard but not nearly as difficult as spending our lives running from it. Embracing our vulnerabilities is risky but not nearly as dangerous as giving up on love and belonging and joy — the experiences that make us the most vulnerable. Only when we are brave enough to explore the darkness will we discover the infinite power of our light.”
“When we deny our stories, they define us. When we own our stories, we get to write the ending.”
We are very blessed that some of the biggest names in Business, VC funding, Sports, and Entertainment read this column. Is there a person in the world, or in the US whom you would love to have a private breakfast or lunch with, and why? He or she might just see this 🙂
I’d love to grab breakfast or lunch or just meet up with Steve Carell. Any role that he’s in brings me comfort — he’s just got that type of personality. My dad’s personality also reminds me of Steve Carell so it definitely ends up being a comfort factor for me. It is a life goal of mine to hug Steve Carell — fingers crossed we can make this happen!
Thank you so much for these insights! This was so inspiring!
Unstoppable: How Lexie Foley Has Redefined Success While Navigating Society With Chronic Illnesses… was originally published in Authority Magazine on Medium, where people are continuing the conversation by highlighting and responding to this story.