Why I Don’t Live in Constant Fear

This month marks six years since I checked myself into the psychiatric ward at First Hospital Wyoming Valley. Coming this spring, it will be five years ago that I was diagnosed with Anti-NMDA Receptor Autoimmune Encephalitis – and four years since my relapse with the same disease.

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I am far beyond acceptance of what has happened to me, from the multiple misdiagnoses to the blood clot caused by treatment to the plain unfairness of having an autoimmune disorder. I’m no longer on any medication. I don’t need to have regularly scheduled scans. I’m not angry anymore. I’ve moved on. I am healed. However, one question that I’m asked fairly frequently, and a topic that I see so many others grappling with is but aren’t you afraid of a relapse?

My answer is simple. No. I don’t think about relapse for two reasons. The first is because I already have a plan in place with my doctor if I should ever relapse again. I am fortunate enough to have a neurologist who is experienced in and comfortable with treating ANMDARE. We have agreed that at the first symptom, whether it is something hugely physical or a miniscule psychiatric change, I will call her and go in for a rituximab treatment. We won’t wait around for scans and bloodwork; we will go straight to the treatment that has worked so well for me in the past. So I don’t have to worry about what will happen because this plan is on the back burner in case I ever need it.

The second reason I don’t bother worrying about a relapse is because I’m twenty-five years old and I need to live my life. A year and a half of my short time on earth was wasted while I was zombified on lithium and depakote during that awful psych misdiagnosis. I refuse to miss out on another second. Sure, I took my time getting back into normal daily life to make sure I was ready for it. Then I jumped back in.

When I was sick, I was single-mindedly focused on one goal: getting better. It took a lot out of me to fight for my life, but it was worth every second. Now that I’m healed, though, I need to focus on the bigger picture. That would not be possible if I was looking cautiously around every corner, afraid that I might end up back at square one. Constant worry is a waste of energy that for me could be better channeled into schoolwork, yoga, drinks with friends, enduring a 40-minute train commute, or reading a really good book. I stay positive as much as I can, but it’s difficult to be that cliche of “I almost died, so now I value every day of my life much more.” That’s because every day is different; every day presents new challenges. I will not let fear of something I have conquered twice now be one of those challenges. I have more goals to accomplish, like finishing graduate school, landing a career, writing my memoir, and growing relationships with friends, family, and Chris.

I intend to have the time of my life doing so.

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2 thoughts on “Why I Don’t Live in Constant Fear

  1. Very encouraging to a mother of a then 11 year old now 12 year old, who struggles with fear anger and gratefulness regarding my daughter’s fight with nmda receptor encephalitis,she is recovering very well and I have never been more grateful for the fighter in her, and in the intelligence, wisdom and faith of the doctors nurses therapists and family who cared for and still treat my child. I just wish I could forget the worst parts of this horrific illness. But now my daughter is better physically mentally and emotionally she is maybe 95%. She feels like her friends forgot her and though her best friend never leaves her behind, her school friends don’t call or check in on social media or any of that. It’s difficult to explain to Cyan that they are being 12 yr old girls. She learned a hard lesson yesterday about real friendship from a friend who she thought cared about her. Her cries broke my soul. I can only give her my love encouragement and support

    1. She will learn, and she will heal, and while it is a really difficult time right now, the lessons she will take with her will make her a stronger person than any of those girls. xo

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