Want to share your NMO story? Start here!
"I want to share my story but I don't know... I don't even know where to start."
If this sounds like you, you're not alone. I've heard had many conversations with other NMO warriors who have said this time and time again. Getting started can be the hardest part. Especially if this is the first time you've ever shared your NMO story.
Sharing your unique perspective
Living with NMOcan be confusing, frustrating, and downright scary. Unfortunately, you now first hand that no doctor can help you perspective on the nitty gritty questions such as:
- Am I currently being treated correctly?
- Is it normal for me to feel heat sensitivity like this?
- What does the plasma exchange feel like?
- How do I explain what chronic pain is like to others?
- Are there others out that experience "XYZ" like me?
- Will I ever live a normal life again?
Only another NMO community member can provide this type of insight. Only YOU can provide this type of insight. This is why we encourage you to share your story. We welcome the good, the bad, and the ugly.
Sharing your NMO story can be scary at first
It can be scary to think about sharing something so personal for the world to see. You might even wonder how others will respond, or if they will respond at all. Or maybe that little voice in the back of your mind makes you wonder if anybody wants to hear what you have to say.
I can assure you that people DO want to hear from you. I read every story and comment that gets submitted to Neuromyelitis-optica.net. Each and every story has a tremendous impact and helps raise awareness for the challenges of living with and caring for NMO. You never know who will read your story, and how they might be able to relate or how your unique experience could help someone make sense of their unique NMO journey.
Ready to share? Here are some tips!
While there isn't a single format or structure for a story, I hope these help you with sharing yours, whenever you are ready of course. Let's get started!
First, introduce yourself
Start with a short introduction about yourself. Remember your audience does not know who you are, so include relevant aspects about your background or interests. What symptoms lead to your diagnosis? Were you previously misdiagnosed? How have you learned to cope with NMO symptoms? Let us know how you felt after getting the diagnosis.
Share about your treatment path
Finding the right treatment can be a tricky process. While we do not ask you to provide medical insight, hearing your experiences could help inform someone on what's possible. They talk about your visits to the doctors, and what they are learning about NMO. Have you undergone any procedures? How has that been going? What has the recovery process been like for you? Have you had to work out a caregiver dynamic?
Conclude with how you are doing today
End your story with a reflection or an update on how they are doing. Have you made any progress since the beginning of your journey, or have things gotten worse? What mental hurdles are you facing? What physical losses have had to navigate? Have you found support online or in-person? What are your hopes or plans for managing your life and relationships?
Don't forget to make it personal
No two stories are the same. Be sure to incorporate some personal touches to make your story unique to you. Whether it's your raw emotions, sense of humor, or writing your story like a poem or song, your story can be as unique as you are. Submit your story and if you feel this is something you enjoy consider joining our team.
Help others feel a little less alone
There are also other ways to support!
Not yet ready to share your story? That is okay! You can also always support someone by checking out our community forums and helping answer questions others may have. You have the ability to read other people's stories and follow some of our community advocates to see how their lives have unfolded since their diagnosis.
I look forward to reading your story! If you ever have any questions, feel free to message me.
-Jada (Neuromyelitis-optica.netTeam Member)
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