Life After an NMO Diagnosis Is Similar to the Stages of Grief

Newly diagnosed with NMO? Here are some words of wisdom

Jennifer van Amerom avatar

by Jennifer van Amerom |

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Meeting another patient with neuromyelitis optica (NMO) is a rare occurrence — as rare as this disease. While most of us have incredible support networks, there’s something unparalleled about meeting another person who knows exactly what you’re going through. We don’t have to search for the right words to explain the pain and fear we feel. We can empathize with each other about what we’ve endured.

I’ve been fortunate to meet several other patients with NMO over the past 13 years, but I had to make the effort. I attended medical conferences, joined online support groups, and became an advocate. One of the greatest gifts a patient can give another patient is hope. Each of us will have a separate journey with NMO, but knowing that others like me are also living a full life is inspiring.

When I meet someone who was recently diagnosed, I have mixed emotions. I’m initially disappointed for them, because I would never wish this diagnosis on anyone. As I listen to their stories, I can see that while each is different from mine, they’re also the same in many ways. I find myself reflecting on my own journey.

I remember going through those first couple years with uncertainty and confusion. Then I try to reframe my mindset by looking at how far I’ve come despite this disease. And then I’m hopeful. If I can get this far, I can make it even further.

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As a more experienced patient, I’ve had several years since my diagnosis to ponder things from afar, and I can clearly see a pattern that we all likely face while living with NMO.

When I tried to map out this journey, it dawned on me that it’s similar to the various stages of grieving. Some say that there are five stages of grief, while others say seven. In the interest of this column, I’ll link being an NMO patient to the seven stages of grief I found at this website.

1. Shock and disbelief

While the route to diagnosis is different for everyone, NMO patients will tell you that there’s a period when we feel numb. We can’t believe this is happening to us, and some of us are in such denial that we’ll avoid seeking medical care. Sadly, some patients tell harrowing tales of their doctors also being in denial, which can lead to a misdiagnosis until a major flare occurs.

2. Pain and guilt

There’s a lot of pain with NMO, but nothing like watching our loved ones feel helpless as they stand by our side. There’s also the emotional pain of accepting our new reality, and the sting of disappointment when those we assumed would be there for us simply aren’t.

3. Anger and bargaining

I went through a period when my anger isolated me. The world doesn’t make sense when you’re diagnosed. Spiritual believers might bargain with God or try to make sense of whatever lesson we’re supposed to have learned from this pain and suffering.

4. Depression, reflection, and loneliness

I’ve always considered this the tipping point for patients. While we all go through periods of depression, not all of us can get out of this rut. Even more troubling, many patients can slip back into this stage more than once, especially when recurring flares happen.

5. An upward turn

This is the moment I see the most hope. It’s when we patients become advocates, finding our own voice and purpose. It’s when we pursue our career goals and start to believe that we can exist with illness.

6. Reconstruction and working through it

Like a phoenix rising from the ashes, patients become better versions of themselves. Once we survive another attack, there’s only one question we should be asking ourselves: If you only had one more day, what would you do to make it count?

7. Acceptance

This might seem odd, but I feel stronger with NMO. I know what I can endure. I know who I am and who I want to be. I live life with purpose and conviction, even if that purpose is a nap today. Our mantra is the Serenity Prayer: “Lord, grant me the strength to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.”

Note: Neuromyelitis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health providers with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Neuromyelitis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to neuromyelitis optica spectrum disorder (NMOSD).


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