OMG! They’re Just Like Me!
Like many, I felt very alone when I received my NMO diagnosis. It was a disease that I had never heard of, so surely no one else could be living with it, or could they? The day that I found out about NMO was a whirlwind. It was like I was stuck, but everything around me was still moving.
With NMO, I felt so alone
For months I felt alone, but I was still pushing on through life. I started a candle business to keep me occupied, and my local paper covered my story. People started to acknowledge me and ask questions about NMO, and I felt a little less alone, but these people couldn’t relate. Talking to people was therapeutic, somewhat, but people still didn’t really understand.
Finding my community
The day I was contacted by reps from Health Union who had said that they read the article about me, and the fact that I have NMO, was one that I will never forget. They said that they had started a new community for people who have NMO and asked if I wanted to be an advocate. I was elated. You mean to tell me there is a whole community of people like me? People who know what I am going through? People I can talk to? It was like Christmas!
I feel like I'm doing good
Providing content for the NMO community has been rewarding. I feel like I am giving hope to newly diagnosed patients, and even patients that have been diagnosed for longer by sharing my experiences. We have monthly meetings, and it feels like home; but then something bigger happened…
I started to become more present on social media. With that presence comes followers, and one of those followers happened to be the Guthy-Jackson Charitable Foundation. I had briefly heard of them, but I didn’t know much about them and what they did. A patient coordinator reached out on one of my posts and asked if I was coming to their patient day in Los Angeles, California from July 9th through the 11th. I had no idea what it was and I'd heard nothing about it.
Guthy-Jackson's patient day
We exchanged contact information, and she reached out to me with more details about patient day, and about becoming an advocate. YAHTZEE! How can you beat that offer? While I was already an NMO advocate and got to meet most of my peers via video chat, now I was going to physically be in the same rooms with dozens of people like me, sharing their stories and their experiences. I was going to get to talk to doctors and ask them questions. I was going to get access to resources. The excitement boiled over!
I hadn't traveled alone in awhile
I was nervous to go. It was my first time traveling by plane since I had been sick, and I was flying alone. I made sure to contact the airline to request special assistance to help me navigate through the airports, and I pre-checked my bag, so I didn’t have to worry about dragging it in addition to my cane and my backpack. There were some hiccups, but overall, it made things a lot easier. I made it to California in one piece, and luckily the hotel was only 4 minutes away, and there was a shuttle to assist me.
Getting to know my people
The first day there was basically the set-up day for the events, and I got to meet people on the advocacy council. We made introductions, and some of the people that I previously met virtually I got to see in person. We had dinner together, and I also got to meet some of the pharmaceutical reps and doctors that night.
I was in awe
The next day was a big day. We did a meet and greet, and it was so overwhelming that, by the time the night ended, I was in tears. I got to see people that I had only met via social media, I got to meet people that I had never seen before, but most importantly, I got to meet MY people: people who looked like me, people who felt like me, people who had the same symptoms and pain as me. People shared their stories, and sometimes you think your story is bad until you hear someone else’s.
Feeling so grateful
The rest of the weekend was a whirlwind of emotions, questions, and joy. I made friends quickly, and that was my comfort for the time that I was there. I left the weekend feeling so full and so grateful to be amongst people and feel like I can be myself, and that I’m not being a burden. Not that I have been told that I am a burden, but I think that NMO (and probably most debilitating, chronic illnesses) can make you feel that way.
That weekend gave me a renewed sense of purpose and lighted a fire to go even harder in my advocacy journey. The weekend also left me with COVID, but that’s another story for another day!
Were you misdiagnosed, prior to being diagnosed with NMOSD?