NMO, Social Media, and my Mental Health
Last updated: May 2023
It was pre-pandemic when I decided to start sharing my NMO story on social media. I started sharing my story online because I was getting tired of people asking what was wrong with me. In all honestly, I was looking for more support. I would have never imagined that my Instagram would grow as quickly as it did.
My first taste of sharing my NMO story on social media
During the start of the pandemic, I had some time on my hands. I started a YouTube channel to try to explain what I was living through with NMO. On my YouTube channel, I dabbled in different topics, like sharing products that I used to ease life with NMO.
I even introduced my kids and shared their thoughts and feelings about what NMO has done with their mommy, me. I gained a few followers and met some fantastic people.
More of a commitment than I thought
But after a few videos, I came to the realization that it takes a lot of work to create those videos. I spent more time editing and researching information than filming, and at one point, it wasn’t becoming fun anymore.
As a mom, having two young active boys who were in school at home because of COVID was not easy. I continued sharing snippets of my life and NMO on my social media platforms: Facebook and Instagram.
But I was more active on Instagram because it was easier and quicker for me to share information.
Growing my own NMO community with my Instagram, fab_nmo
I really wanted to find people like myself with an autoimmune condition, specifically NMO. So, I started to look for people with hashtags like #nmo, #neuromyelitisoptica, and so on and so forth. I started posting my own content with those same hashtags in hopes that people would find me. But I had no clue that my Instagram page, fab_nmo, would grow and become so popular.
I was finally finding my people!
With time and more content posting came more followers and a lot more direct messages, or private messages. It was very exciting because I was finally finding my community, my niches, my people.
I would spend hours on my phone connecting with people from Brazil, Spain, Russia, and many more countries.
...But I started to forget the important things
It was amazing to finally feel understood! But then I started noticing that I was spending so much time on social media. I was forgetting what was most important in my world, my children.
I'd catch myself on my phone while hanging out with my boys and instantly feel horrible because I’m not giving them the attention how they deserve.
Hitting the pause button
I took a pause from the electronics and social media. Overall, mentally, I took a break from everything and started connecting more with my family. I started realizing the importance of reality in the world I live in versus the world of social media.
Balancing life and social media is KEY!
It was an amazing revelation. These are the things I thought I knew, but getting sucked into the world of social media made me forget everything. Once I set my priorities straight, I started making a social media schedule and would set certain hours of availability for social media.
After all, in the midst of the pandemic, big companies started reaching out to me for paid opportunities. I was advocating, connecting with other patients, and making money. I had to create a balance that allowed me to earn passive income but not interfere with my life at home.
The bottom line of social media: Connection and relatability
Currently, I create content when I have something big going on, whether it's good, bad, or for a paid partnership. People relate to me and often connect with my content. I've made a lot of new friends that have NMO, MS, Lupus, and many more autoimmune diseases. It's incredible the power of social media!
If there's one thing you should take away from my story...
Take a break from social when you need it. Social media will always be a finger click away. Your mental health needs more than a few clicks; it needs all of you. Always take care of yourself, especially your mental health.
How does social media affect your life with NMO?
Typically, how much time passes between attacks for you?