It’s important to realize when the caregiver needs care

My best friends are my rock. They are my confidants, my vault, and the keepers of my dreams. They drop everything, no matter the hour, no matter the chaos, to be there for me. If loyalty were a sport, they’d be Olympic level. And while I live with neuromyelitis optica spectrum disorder (NMOSD), they live with something quieter but equally demanding: the weight of being there for someone they love.

We talk a lot about caregivers, usually imagining the people who manage medications, coordinate appointments, or help with mobility. But caregiving isn’t limited to those tasks. It encompasses any sustained emotional, mental, or practical support offered to someone navigating a chronic illness.

There’s another group of people in my life I think about often, whom I call adjacent caregivers. While they aren’t administering treatments, speaking to specialists, or involved with the day-to-day management of my NMOSD, they are still deeply woven into the fabric of my well-being. They’re the ones in my life who show up at a moment’s notice, who listen when I need them to, and steady me when life tilts.

My best friends are adjacent caregivers in every sense. They’re the ones who answer the phone when I’m scared. They’re the ones who visit with me through symptom flare-ups and the emotional fallout of living with a rare disease. They’re also the ones who understand how life stressors impact my NMOSD, and they adjust their support with an intuitive tenderness. Somehow, they know when to step in when I’m overwhelmed, step back when I need space, and kindly remind me that my health should be my priority when I try to forget it.

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My friends are a huge part of who I am despite NMOSD. They see me as determined, hard-working, and capable, and not as someone with a rare disease, though I know they still carry pieces of my burden without ever calling it a burden.

Here’s the part I wrestle with, though: I worry about them. I worry that they pour so much into supporting me that they forget to fully support themselves. That they hold their breath waiting for my next update, instead of exhaling into their own lives. I worry that their compassion becomes a quiet exhaustion they never name.

Caregivers, adjacent or otherwise, can fall into a pattern of self-neglect. It’s not intentional, but more like a slow erosion. I’ve seen mine skip rest because I need them or push aside their own stress because “it’s not as bad” as my NMOSD. While they never intended to, I’ve even heard them minimize their feelings because they don’t want to add more weight onto me. And I regularly watch my caregivers give up their evenings and weekends to be there for me.

But caregiving, even the emotional kind, is energy intensive. And no one, not even my strong best friends, can give endlessly without replenishing themselves.

So this is my message to the caregivers, adjacent or not, in my life, and to anyone who loves someone with a chronic illness: Please take care of yourselves, too — not as an afterthought or a luxury, but as a necessity.

Your well-being is not secondary to mine. Your stress is not less important. Your body and mind deserve the same compassion you so freely give to me. I need you healthy and joyful. Your presence in my life is not just helpful, it’s foundational. There’s a reason during a flight safety demonstration that they say, “Put your mask on first before assisting others.”

I know the amount of self-sacrifice required to be a caregiver, but it’s OK for us to switch roles sometimes when my NMOSD lets me take the lead. And to my adjacent caregivers, I make a point of thanking them for the role they play in my life every chance I get, but their support of me shouldn’t eclipse any of their needs.

My friends are extraordinary. They are the kind of people who show up before I even know I need them. But it’s important to me that they show up for themselves with the same urgency, and that they let me do so, too, when I’m able.

Caregivers, regardless of the type or amount of time they put in, are the quiet heroes of chronic illness. They help hold me together in ways the world rarely sees. But even heroes need care, too.

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.