Finding Myself on the Other Side of Support After a Friend’s Diagnosis

A columnist with NMO reflects on her fears after receiving unexpected news

Jennifer van Amerom avatar

by Jennifer van Amerom |

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I am scared of dying.

This is a truth I have avoided saying out loud or acknowledging for the last 13 years. When I was diagnosed with neuromyelitis optica (NMO), I Googled the disorder, and the internet only gave me five years to live. My loved ones found the same information. It put them into a frenzy, unsure how to support me.

Last week, one of my closest friends was diagnosed with two types of cancer. She’s only a year younger than I am. We raise our young children together. She’s been there for all my important moments in life since college. She’s one of the people I reach out to every time I find myself in a hospital bed, scared and trying to calm myself down.

While I’ve never enjoyed being vulnerable, this new support role I find myself in is even more difficult. My friend is a good person and does not deserve to deal with the challenges of our healthcare system, the medications, and the same fears I’ve avoided for so long. I cannot wrap my brain around how this is fair to her and her young family.

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As I listened to her disbelief and witnessed a few of the challenging dynamics she’s facing, I was forced to acknowledge my feelings. While I can offer her empathy and a perspective that many others cannot, facing my feelings about mortality is something I’m only beginning to do.

Knowing that NMO can take my life is a conversation I only have in my mind — and then I immediately try to push it out. I’ve never talked about it with my loved ones. I’m not brave enough. This is as raw as I can be.

As a patient, it feels patronizing every time a specialist tells me what to do next because deep down I know the truth. This disease will eventually win. The pain will become worse. The medications and treatments will stop working. My body will eventually have had enough.

But this is my rage talking. I’m angry that I have NMO. I’m angry that I’ve had to be vulnerable and needy for over a decade. I’m angry that my friend is also sick. I’m angry at how unfair this all is.

Observing illness from the other side of support has made me feel panicked. I watched my 10-year-old daughter sleep several nights this past week. She’s not ready to be without me. I haven’t taught her everything she needs to know from me in this lifetime. As a family, we don’t have a contingency plan should things take a sudden turn.

My friend doesn’t have a plan either, because no one expected this. One evening, as we talked late into the night, she told me how one minute she thought her life was going one way, and in a day, her life was flipped upside down and now everything is different. My heart shattered for her because I know exactly what she means. I wouldn’t want that feeling put upon my worst enemy.

It isn’t enough to simply say, “Well, that’s life.” We’ve both played by the rules, lived our lives with integrity and honesty. But the universe is cruel, as it seems like horrible things only happen to good people.

As we prepare to face this new battle together and show up for each other in whatever ways we need, something dawned on me. While lying awake staring at the ceiling one evening, I realized I’ll never think less of my friend for showing vulnerability, for being terrified, and for not having a plan — so why do I think less of myself when I need support?

For now, I won’t plague her with positive platitudes. From my experience, I know how empty the “you can do it” sentiment feels. Instead, I’ll be here for her and listen, and most importantly, I’ll keep telling her I’m scared for her, too. We’ll be scared together.

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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