What Is It Like Supporting Someone With NMO? I Interview My Caregiver!
My wife is also my caregiver. It’s a fine balancing act between our romantic relationship and the practical support I need due to my Neuromyelitis Optica (NMO).
We’d only been together for 8 months when I was diagnosed. Now I need support with household tasks and some personal care, and after 9 years, I think we’ve got it down pretty well! Here, I interview her and share her perspective on being a caregiver and supporting a person with NMO.
Did my becoming disabled change your feelings for me in any way?
At first, my feelings didn’t come into it. I was in shock, numb. You’d gone from being able to walk to being paralyzed from the chest down in the space of 48 hours! At that time, we were falling madly in love, we hadn’t been together long, and everything was so fresh. My first instinct was to ask, “What can I do to make your recovery better?” I didn’t even realize that meant I was becoming a caregiver.
It changed my feelings towards other people interacting with you. I started noticing your experience as a disabled person. I became aware of ableism and inaccessibility. It made me defensive, protective. I had to learn how a disabled person experiences the world to help you manage it. But through all of that I still saw you as you.
What is the hardest part of being a caregiver for someone with NMO?
Being an emotional support but feeling exhausted. It’s putting someone else ahead of you, while trying not to wear yourself out.
How do you cope with the challenges of being a caregiver?
I think, probably looking after myself. I only started doing that in the last couple of years when the pandemic gave me time. I learned how to be kind to me. That means focusing on meditation, reading, writing, and exploring my creativity. I’ve also developed my love of good food. Rather than seeing cooking every meal as a chore, I’ve turned it into something I really enjoy. Regardless of what needs to be done I always make time for me now, and you’ve encouraged that.
What do you think is the hardest thing for the person with NMO?
I think it’s been hard for you to see my struggle. You’ve seen me emotionally and physically drained, especially before I was consciously making time for myself. I know you’ve felt like a burden, but you aren’t. You have a burden, and we share that.
What can someone with NMO do to help their caregiver?
Talk to them, tell them it’s okay to struggle. Encourage them to be kind to themselves and explore their own needs. Understand what helps them relax. Help them prioritize their day if things are really tough – sometimes juggling everything can be a challenge! Also, make a point of connecting with each other. Work on your romantic relationship so that’s a strong part of everything, not just the practical caregiving side of things.
What is the most rewarding part of being a caregiver?
We’ve developed a closeness that I’m not sure people in non-care-giving relationships have. We’ve both had to be really vulnerable with each other, and that started really early on in our relationship. We’ve had to be honest and open about our needs, making sure we communicate more. That’s the kind of thing that brings you even closer.
What can you do together to strengthen your relationship?
Enjoy things together, whether that be going to concerts, a good TV series, or just getting out into nature. It doesn’t all have to be about NMO. Intimacycan be challenging with any damage to the spinal cord, so take things slowly in the bedroom, making sure to talk about how you’re feeling. There’s so much more to a relationship than the caregiving!
What final piece of advice would you give to other caregivers?
Talk to your partner. Allow yourself to be vulnerable. Find out what soothes your soul and make time for that.
Were you misdiagnosed, prior to being diagnosed with NMOSD?