After a difficult year due to NMOSD, it’s time to address my mental health

In the last year, I’ve gone from battle to battle, surviving one attack after another of neuromyelitis optica spectrum disorder (NMOSD). I didn’t have time to figure out how all of this made me feel. Instead, I focused on work, the closest thing I have to normal, and put one foot in front of the other.

Then, one day when I was meeting with my neurologist to switch treatments, he asked me how I was doing. “No really, how are you doing?” he said while clasping my hand. I hadn’t actually thought about it until then.

No, I wasn’t OK. No, NMOSD attacks aren’t easy. And no, I hadn’t taken a moment to acknowledge my feelings. I decided then and there that I needed to seek professional help.

So this week, I’ll be meeting my new psychiatrist, who specializes in working with patients who have rare autoimmune disorders. I’m not sure where to begin. How do I summarize years of struggle, resilience, and survival in a way that makes sense? The idea of opening up to someone new fills me with hesitation. It’s not that I don’t believe in therapy or psychiatry; I do. But starting over and sharing the darkest corners of my mind to a stranger feels like an exhausting endeavor. There’s vulnerability in saying, “Here’s my story. Here’s my pain. Please handle them with care.”

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One step at a time

Despite my hesitation, I know that prioritizing my mental health is a key part of survival. It’s a form of self-preservation, a way to ensure that I can show up for myself and my family. My body already fights a relentless battle with NMOSD; if I also neglect my mind, I’ll risk losing control over the one thing I can still fight for: peace.

But where do I begin? Do I start with today’s struggles and the exhaustion of balancing medical treatments, work, and family? Or do I go back 15 years, when everything started unraveling? Each chapter of my life is important and helped to shape the person I am today.

I think the hardest part will be explaining my pain. Physical pain is easy to describe in clinical terms like “burning,” “stabbing,” “electrical shocks,” and “fatigue that settles into my bones.” But emotional pain — the fear that lingers during the quietest hours of the night — that’s harder to put into words. How do I explain the feeling of living on the edge, knowing that my body could betray me at any moment? How do I convey the emotional exhaustion of trying to look OK when I feel anything but?

Since my last transverse myelitis attack — which is caused by inflammation in the spinal cord resulting in a multitude of symptoms like pain, muscle weakness, sensory problems, and even paralysis — the feeling in both of my big toes hasn’t returned. So now I walk around wiggling my toes because it feels like there’s something between them. But it’s just a lack of feeling caused by nerve disruption.

This is my personal torture, and there isn’t anything I can do about it. I worry that explaining my frustration won’t help the situation and may even make things worse. Pointing out my frustration and giving it weight in my mind without any physical resolution feels aggravating.

I also fear being misunderstood. I fear that it’s impossible for someone else to understand what it’s like to live in a body that is simultaneously like a battlefield and a prison. But I know that I can’t let fear prevent me from seeking help. If I want to keep going — not just existing, but truly living — I need to let someone in. I need to believe that there is healing in telling my story.

After what I’ve endured in the past year, this is the next step in taking care of me. As I prepare to meet my new psychiatrist, I remind myself that I don’t have to get it all out in one session. I don’t need to have the perfect words to describe what I’ve been through. I just have to show up and try. If there’s one thing I’ve learned in my years of fighting, it’s that my survival depends on it.

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.