I wanted to title this “what they don’t tell you about chronic illness” but the truth is, hardly anyone even talks about chronic illness to begin with. To be honest, before I had one, I never really thought about it. Yes, of course, I’ve had friends and family members who struggle with MS, and yes, I’m well-acquainted with mental disorders and the weight they bring, but I’d never really heard anyone talk about the struggles of living with a disability. Even when I went online to find others who deal with neuropathy, muscle weakness, nerve pain/burning, and all the other not-so-fun things I contend with on a regular basis, it was nearly impossible to find books or information on how people  manage.

In fact, my sister used to work at Beacon Press Publishing and gave me a book last Christmas about navigating relationships where one person is fully able-bodied and the other is not. It was the first time that I really stopped to think about my life and all the things I had taken for granted as an able-bodied person. It helped provide me with some of the vocabulary I was desperately seeking, and gave me context for some of the feelings that were bubbling under the surface.

And although it was helpful, it didn’t really make the road much easier. See, one thing they definitely don’t tell you about developing a chronic illness is that you’re going to have to do A LOT of work on your own. You’re going to have to advocate for yourself when you’re at your weakest, to push when you have near nothing left, and to redefine the life that you’ve built and grown to know. Really, that you may have to redefine yourself.

While all chronic illnesses look different and can vary from person to person, one of the hardest things for me to adapt to was the abrupt change in my daily life. I went from living the life I had dreamed of building–going to the office every day, delving into a world that fascinated and excited me–to spending every day just willing my body to do the simplest of tasks. Even as I’ve grown stronger, it’s been difficult to learn how to gauge my energy. How not to push too hard so that I don’t relapse and have to spend weeks in bed or on intense painkillers, crying from the feeling of electric shocks throughout my limbs.

Everything about my life changed the my symptoms started. I had to stop working, fight with insurances, see doctors more times than I care to count, and spend a disturbing amount of money on Uber rides because I can’t manage public transportation. People I thought were friends fell off the map entirely. My routine suddenly seemed dull and my world seemed to shrink at least ten sizes.

Being sick can get so lonely. People stop inviting you to events if you say no too many times. Friends hang out without you in spaces that they assume will be too difficult for you to manage in a wheelchair or with your assistive devices. You start becoming aware of all of the ways that the world is not designed to help support differently-abled people.

But, what also happened, is that I found out who are really my people. I discovered a world beyond my ordinary routine and cultivated a virtual village of incredible, supportive, and understanding women. I allowed the internet to open up ways of thinking and dreaming that law school had beaten out of me. I began dreaming bigger–I started believing that I could start the change that I knew industries needed. I began thinking of out-of-the-box ways that I could serve the communities that fuel me and my passions. I sought out other people who were forging their own paths, and began to plow my own.

It’s scary. In fact, terrifying doesn’t even get at how truly frightening it feels to push against the grain in so many ways every single day–especially not when everyone else seems to be following the path you dreamed of following yourself. Somedays, it can seem downright foolish to be starting your own company or investing your time and money into creating community and changing workplace cultures. I mean, is that even a thing?!

Today was one of those days. A day where I wondered what gave me the audacity to dream such a difficult, grandiose dream. And so when Andrea Beck messaged me to let me know that our episode of her podcast, Taking the Middle Seat, went live, I was deliriously happy. I quickly hit ‘share’ on my Facebook page and sent an excited text message to my family. And then, I cried. No–I sobbed. Full out doubled-over, ugly tears, can’t-catch-my-breath kind of sobbing.

For the first time in nearly a year, I felt like I was really being seen. Like maybe this dream wasn’t so crazy after all. Like maybe, just maybe, it wasn’t so silly to hang onto hope that this new, unforeseen pathway just might work.

So here’s to the dream—to going out there and making this world a better, more comfortable and inclusive place for people who look like me or have stories like mine. And for those who don’t.

See, the thing is, I know we can do better. And I see the many ways we’re failing–failing to talk, failing to brainstorm, failing to act thoughtfully and meaningfully, failing to care about one another as human beings. And I want to change that. I believe we all deserve to operate in environments that help us thrive and encourage us to be our fullest, best selves. That’s why I’ve built Melanin + Moxie and my consulting company, Nichole Gabrielle. And why I’m so incredibly grateful to Andrea for helping me share that belief with her audience.

Please leave a comment or send me a message if you’ve listened/read this. I’d love to hear your thoughts and reactions!

With love and moxie,

Nichole