Telling My NMO Story Can Be Painful

There was a point in my health journey when it’s just bothersome to constantly get questions about my neuromyelitis optica (NMO) diagnosis. While I love advocating for NMO and sharing my story, ideas, issues, and much more, I hate reminding myself of this difficult time in my life. I’m at a point in my journey that when someone asks me about my diagnosis I simply respond with “Google it”.

It may sound rude, but it’s not, and here is why:

When you ask me about my diagnosis, you’re not considering how many times I’ve been asked that question. Or what a painful reminder the repetition of my own story is to me.

Still learning to live with NMO

It’s painful to think back to when I was first diagnosed for many reasons that are obvious today. When I was diagnosed with NMO it took me two to three years to fully accept that I will never be the same person, in all aspects.

Honestly, I’m still learning to live with NMO. Every time I decide to tell my diagnosis story it’s because I’ve chosen to do so and what I mean by that is the following:

Telling my story means I have to mentally be ready to re-live traumatic memories, bring back unwanted emotions and still not cry at the time of speaking.

Telling my story meant I was going to be asked questions that I still don’t know the answer to today.

Telling my story meant that I was left with lingering thoughts, like did I say too much or too little?

Telling my story meant talking about personal things like my children, husband, family, and friends.

Telling my story meant I had to listen to unsolicited, unprofessional advice on cures for a disease that science has yet to discover the cause or cure.

Trauma

It’s hard to remind myself of all the trauma, drama, emotional breakdowns, hospital visits, unanswered questions, and worst of all, the sad reality of no current curability.

Telling my diagnosis story is like beating my brain up while sending traumatic paralyzing signals throughout my body, so that the person whom I’m talking at the moment can feel like they were special to me, for hearing me out. Why do people do that? Ugh!

I understand people are curious but most are not respectful. Most people are not respectful of my privacy, of my time or my feelings.

Share on your terms

I may sound rude, maybe like a witch, but I must speak my truth. With all that said, I did take the time to make a YouTube video and a couple of podcast interviews to help spread awareness on NMO and my story. While it is very important to tell your diagnosis story to connect with others, it’s also important to protect your peace.

If you don’t want to tell your story, then simply say “Google it, it’s too painful to talk about.” Take the time you need to process and digest the fact that you now live with a disease. Take the time to think about whom you are telling your diagnosis story to and how that will help you.

Share your diagnosis story on your terms and time or simply say "Google it".