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NMO and the Impact on Our Caregivers

Last updated: April 2022

NMOSD affects everyone who lives with the disease in different and often awful ways. Where do I start?

Quality of life is impacted

You lose a version of your past self with each attack, leaving you to grieve who and what you used to be. The pain overcomes you more than you care for. Your mental health is tested, and the list goes on. We spend so much time thinking about all of this and reacting to it. But ask yourself, while we spend so much time focused on how our autoimmune disease is affecting us, have we thought about the impacts on the ones closest to us? Sometimes, we forget to be mindful of that. I know I do.

The decline

I got sick, and I mean really, really sick with my second attack. As usual, I had no idea what was going on and it took a couple of months to get an official diagnosis. It was scary for me to say the least. The worst part was that I had gone from this workaholic, superhuman type of woman to one who needed assistance with doing the basic things, like using a toilet. At the time, I remember feeling pretty humiliated. I was overcome with an array of emotions that I found difficulty getting past. On a daily basis, it was clear how I was feeling. Meanwhile, my family watched in horror, while I was rapidly declining as the days flew by.

Quickly jumping into action

I wasn't alone during that second attack. I had my family at my disposal to help me when I could no longer care for myself. Honestly, I couldn't imagine anyone going through such an ordeal alone. It's so difficult. I really thought I was going to die. My husband and my two teenage kids turned into caregivers overnight. They sprung right into action without hesitation. My daughter would get my clothes together, my husband would place me in the shower and would stand outside the door until I was done. My son would pick me and put me in the car. Even my sister in law and my brother were there to help cater to every need I had. They were heroes, but, I became ungrateful.

I just want you to understand

For the longest time after my attack, it was really important to me for my family to understand what I was going through. Countless times I tried to explain to them how I was feeling. When I had bad days, I wanted them to grasp the magnitude of what I was going through. No matter how I'd twist and turn it, they didn't get it. I can't even begin to tell you how frustrating this was.  All I wanted them to do was see my pain. See how the NMOSD made ME feel. I never once stopped to think about anything else.

I had to get out of my own mind

There's no doubt that living with NMO also means your family is too. Sometimes, we forget to be mindful of that. I know I do. I needed them to understand exactly what I was going through, until one day I sat and thought to myself, "why am I doing this? " "Why is this so important to me?" This moment came when I started noticing tension and negativity in my household. At that moment, I had to stop and get out of my own mind. Perhaps, I was being selfish. I spent so much time worrying about what I was going through that I failed to realize they were grieving too. I hadn't taken that in consideration.

Unexpected caregivers

Not every family member is qualified to be a good caregiver. It's just not in some people's nature. It's a difficult position to take on. Caregiving is by far not an easy job. Imagine what it's like to be thrown into a role you didn't necessarily sign up for. That's what it's like for the family members and caregivers affected by NMOSD. Their whole world changes just as yours does. While you are dealing with the emotional turmoil of NMOSD, so are they.

Giving thanks to the caregivers!

Let's show appreciation! Let's also tap into mindfulness. Yes, I have a lot to learn. I am still working on this every single day. At this time, I am spending more time showing appreciation and doing what I can to make caregiving for me as easy as I can. In turn, I have noticed a huge lift in spirits, morale and understanding in my household. Even more so, it has been quite therapeutic for me as well.

Overall, they deserve it! I am thankful that they are still there in my corner fighting this battle alongside me. For that, I will do my best to allow them to embark on this journey with me with an open heart and understanding mind.

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