Social Media and Chronic Illness
I'm an 80s baby. You know, the era of cool kids? Kidding. I remember when my dad came home with clunky equipment one day. As soon as I saw it, I knew exactly what it was. "You got a computer!" I remember saying to him as he focused heavily on setting it up. This was an exciting moment, but I couldn't imagine how evolved this phenomenon would become.
The perks of the internet
Nowadays, almost all households have either a computer, tablet, phone, or some kind of device linking you with access to the internet. Anything you want to know, you can simply Google it. You will likely find the answers you are looking for to your question. When I was first diagnosed, it took me several months to really look into what NMO was and what it meant to live with this condition. When I did, I was grateful to have been able to find some kind of information.
I felt like I was on my own, but the internet helped
Research has come a long way, even in the last year. Information about NMO wasn't as informative in 2020 as it is now. What would I have done without this information? Being diagnosed with a rare condition, there was no one that could truly explain to me what was going on. Not even my doctors. Since the moment I was told, "you have NMO", all the information given to me was vague. Due to this, I understood I was on my own with finding out the full details of what I was to endure.
The era of social media and chronic illness communities
After coming to terms with the enormity of the question "what is NMO?" I quickly figured out that no matter how much I tried to wrap my head around it, I just couldn't imagine living with this condition. How could this happen to me? I needed to see what NMO looked like, knowing this was the only way to find comfort and put my mind at ease. I sought out other individuals living with this condition on social media.
I was surprised by how many people like me that I found
Considering NMO to be a rare condition, my expectations were not high. To my surprise, I found a ton of individuals living with the condition. Having the ability to connect with individuals and obtain the information I was looking for was exactly what I needed to begin advocating for myself. Real experiences by REAL people living with NMO. Pre-NMO, I would have never guessed there was an entire community of people representing various disabilities with a focus on creating awareness. After my diagnosis, I was grateful.
Learning how to advocate for myself
Since I've gained meaningful connections through Instagram, Facebook, Tiktok and Twitter, I have become more educated and versed on all things NMO. I have learned how to advocate for myself. This has been a huge benefit to me because I can fully understand my doctors and the associated terminology along with the plan of care.
Making new friends
I have also been able to make new friends and become more social. Even in my darkest times, I find that I am not alone with how I am feeling. By having these connections, I can easily validate the things I go through with NMO. All too often, I find myself overreacting or associating any problem with the NMO. Although no two individuals with NMO are the same, it helps to be able to take a look at the similarities which can serve as a guide for managing your symptoms of NMO.
Sharing my story has helped so much
I also found that by sharing my story, I was able to help others the way that they've helped me. Online communities serve as a great benefit to anyone suffering from a chronic illness.
Do you have any stories to tell about your experience with online communities?
Were you misdiagnosed, prior to being diagnosed with NMOSD?