Ask the Advocates: What Does Community Mean to You?
Last updated: December 2023
We asked our advocates what having an online NMO community means to them. Here's what they had to say;
"I cannot stress the importance of having an online community for those living with NMO. I could carry on for days on end talking about this topic. Ultimately, it boils down to one thing....having a chronic illness is lonely. It's lonely for those who are suffering from it and for anyone around them that may be impacted by it. Imagine one day, you're just living your best life and then BAM, you have a rare, incurable disease that comes out of nowhere. There is nothing in the world that you can do to prepare for such a devastating fate. Please note, chronic illness does not discriminate. You could be the healthiest person on the face of the earth and still cannot prevent yourself from getting a chronic illness. That's just how it is. With that, the minute you find yourself entering the realms of a new and foreign world of chronic illness, you immediately attempt to connect with like individuals. It's like wolves seeking a pack. Then there's the pack leaders. Ya know! The main one that most people cling on to. At any rate, for me, had it not been for the online community, I don't think I would have been able to find my purpose. That's advocating. Realizing there is a need for people who suffer from a chronic illness, especially something so rare like NMOSD, to speak their truth, honestly and unapologetically. I've been able to find out more about myself than any doctor could have ever told me. I've also made some great friends along the way. Now, this world doesn't seem so lonely anymore."
"When I was first diagnosed with NMO, I immediately turned to the internet to gather as much information as I could. I had no idea that a mighty community of medical unicorns JUST LIKE ME existed! Joining the NMO community felt (and still feels) like a lifeline. I no longer feel alone or isolated in my journey. Being able to share my experiences while also reading about the experiences of other patients has been validating and eye-opening. In addition to making lifelong friendships with NMO patients and their loved ones, I have found an invaluable amount of accurate and reliable medical information about NMO that has helped me expand my understanding of NMO and the treatments available to me."
"When I decided to go public with my diagnosis of NMO, I did for a few reasons. One, because I was getting tired of having to explain myself repeatedly about my diagnoses. Two, because I wanted to meet others like myself, be understood, and find people that I could resonate with."
"Prior to exposing myself on social media, I felt so alone and misunderstood. I felt stuck at a place in my life where no one really comprehended the severity of the diagnoses. At the same time, I felt judged because I didn’t "look ill,” and was even called fake for describing my invisible symptoms. It was a hard moment to go through by myself, but that time alone also allowed me to really do some serious thinking about how I was going to handle NMO in my life."
"An online community of people living with the same diagnosis as myself meant that I wasn’t alone. Finding people like myself was like opening a box of surprises. It made me happy but at the same time saddened me. It saddened me because this horrendous disease is bringing us together (I’d rather be brought together under better circumstances). In the first month of my coming out with my diagnosis of NMO, so many people reached out to me via private messages: People diagnosed with NMO, caregivers, families of people living with NMO, people from Spanish-speaking countries; so many people, and it was so amazing!"
"I wasn’t alone and there was a whole world of my type of people out there, people with NMO. Social media has brought most of us together and I’m sure there are more who aren’t on social media and that haven't yet been diagnosed. There are many groups for people living with NMO and caregivers that have really helped me and my family throughout this journey. These online communities gave my family, friends, and me a great starting point in terms of conversations and lifestyle. I personally would not be as knowledgeable about life with NMO if not for these online communities. Not only the online communities but also individuals who were willing to take time out of their day to talk to me about their experiences. I really appreciate everyone who has helped and guided me throughout my journey."
"Getting diagnosed with NMO was a devastating blow. On the one hand, there is some relief, because you have an answer to the issues that you were having, but then you have so many questions that run through your mind. "Did I cause this?" "Did I do something wrong?" "Did I miss something?" Before my diagnosis, I had never heard of the disease. Once I did hear of NMO, I did what I think everyone who gets an unfamiliar diagnosis does, and I researched. It was scary to read all of the things and have a bunch of 'what-ifs' in your head. Having a community of people who have had the same experiences makes me feel less alone. I don’t feel strange when I say something I am experiencing or have experienced because they get it. When I say that I am treated a certain way, the relatability that is there is like no other. I am thankful for the community I have found, and as it grows I get more excited, because with growth also comes more awareness."
"Having an NMO community to go to now is a blessing. Learning about others' experiences and hearing from those who deal with the same condition that I do really brings new perspectives. I feel as if each day I learn something new or feel a connection to someone with similar issues with this disease. It's almost like therapy without the office and someone trying their best to. give me the answers I want, but here I get the real answers and real stories from people living with NMO or someone that knows someone with it. It's truly amazing that someone realized that NMO patients need a safe space to vent or a place to break down with no shame or judgment. Sometimes I feel like I don't need to burden those around me with what I feel and there are bigger things to worry about. But NMO is real and I shouldn't make myself feel this way. Now I have a community where I don't feel like a burden and can be myself and not hide my insecurities."
What does having an online community for those who contend with NMO mean to you?
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