My Honest Letter to NMOSD

Dear NMOSD,

Why me?

I’m wondering why I was chosen to be a victim of such a horrific disease. I know I’m a strong person, both mentally and physically. But I’m tired of fighting for basic human biological rights. Ever since I was diagnosed with NMOSD, I feel violated, my soul has been ripped out of my body, my body crushed down to crumbles, and my spirit blown away from me.

Navigating the unpredictability of life with NMOSD

My mental stability has been tested; my brain is fried. It's been fried from trying to come up with solutions about how to live this unpredictable lifestyle with you, NMOSD. I have no type of health stability, and it’s getting tiring. I can’t even plan for things ahead of time because I don’t know how my body will react or what circumstances will be for that future moment. It’s been difficult dealing with the unknown and expecting real results.

Is it my fault? Dealing with chronic illness guilt

I often question my sanity and if I’m crazy for even questioning it. As a young woman, mother of two, university-educated person, I question the changes that have happened in my life, which were not my fault. Or were they? After all, it was my own body that attacked itself, so is this disease my fault, or is the world I’m living in to blame?

I have loads of questions in my head and not enough answers. Then again, I wonder, "if things were always easy, what is the purpose of going through a life-changing obstacle?" Yes, I know we are supposed to grow and evolve from changes in our lives, but it seems like I don’t even have the time to process the changes. I feel like I’m not given a chance to take a step back and analyze what my next move will be without getting a new symptom. I almost feel like a voodoo doll being thrown around without a chance to rest.

When I was first faced with a diagnosis of NMOSD, I had no clue that I was confronting an unpredictable lifestyle. At the same time, I had emotions deep inside me that I didn’t know existed. I was unaware that I could feel relieved, sad, happy, anxious, mad, excited, and so many more emotions at once. I’m not bipolar, I'm just human.

Finding relief in a correct NMOSD diagnosis

You may be wondering when and how you can feel all of this at once. I’ll tell you when; when you finally get a correct diagnosis after years of stumbling while walking, peeing my pants, and falling everywhere without reason. It was a sigh of relief when I finally knew the real reason why symptoms like these kept happening to me. It’s also frustrating on so many levels because it’s the beginning of a long journey that I was not prepared for.

Lessons learned: Growth without gratitude

In all this mess NMOSD has put me through, I’ve learned to acknowledge it's impact without feeling forced to be thankful for it. This journey has accelerated my maturity level in every way possible. While I don't offer a "thank you," I must recognize how living with a rare disease has shifted my perspective:

• I acknowledge NMOSD for making me realize what is really important in life.
• I acknowledge NMOSD for stripping away materialistic desires and showing me the weight of real-life values.
• I acknowledge you for showing me the value of time and spending it correctly with my loved ones.
• I acknowledge this disease for revealing the truth about my friendships and the strength of my relationship with my husband.
• I acknowledge the perspective it has given me as a parent; I can now lead my children with a different light, helping them grow into empathetic, productive adults.
• I acknowledge you because, even at a young age, I understand the moral of my life story—and I am the one who gets to tell it.

NMOSD, you’ve opened my eyes to what no other experience could have done thus far, and for that, I acknowledge you, but don’t thank you.

Sincerely,

Your victim

I promise, I understand

For anyone else feeling frustrated during this process, just know that the NMOSD community and I get it. I promise that I truly get everything you’re going through. At times, it might feel like you’re going crazy or feel alone because this subject is not very relatable due to the rarity of this disease. But trust me, it is relatable to the right people. Find what makes you happy and do it. Don’t fall into the spiraling drain of depression because you are so much more than a person living with NMOSD. It’s ok to acknowledge your feelings, but move forward with a positive foot forward.

What would your letter to NMO look like?