Talking About NMOSD: An Elephant In The House

Throughout this process of living with NMOSD, mental health has been like the silent elephant in the house for my family. As a mother of two young boys, a wife, and the person living with this chronic disease, I’ve had to do a lot of soul searching and self-care to figure out how to initiate a conversation about my health with my family.

Communicating NMOSD to family

My first witnesses, which are my family members, know exactly what I experience with this disease. They witness the horrendous flares and relapses that my body goes through due to having NMOSD. I know this scares my family tremendously, especially my children. This is why I decided that I’m going to be as open and expressive as I can be, while also acknowledging their level of capacity to understand.

Emotional impact of NMOSD progression

I remember in the beginning I used to lash out emotionally towards those around me because of the progression of my disability due to NMOSD, which was not, at that time, known to me. I also remember crying a lot because this was not the type of person I am. I had always been a happy, communicable person. One day as I sat with my feelings, I just had this "ah-ha" moment as to how I could handle my emotions around my progressing disease.

Self awareness with chronic illness

I started doing a lot of self-analyzing and becoming more self-aware of my feelings. I developed a greater sense of awareness not only of my own feelings but of those around me as well. I had to really sit in the middle of my feelings and soak them up to realize that what I was going through needed to be talked about, and not just in a general way

Clear versus general conversation about NMOSD

General conversations usually leave us wondering with a lot of doubts and even more questions. But when you have a detailed conversation, especially pertaining to something that is affecting you directly, like NMOSD, it matters to be specific. It also matters to share details that only you feel so that others understand you better. Doing so has helped me have better control of doubtful situations with my family.

Explaining NMOSD to young children

One lesson NMOSD has taught me is that, as a mother living with a chronic disease, having clear communications with my children while keeping in mind their capacity to understand is very important; it brings us all a sense of ease. For example, my 6-year-old son doesn’t understand much other than mommy’s legs aren’t working. He knows I visit doctors often and get a lot of shots, but he is too little to understand the severity of NMOSD. I’ve had to explain to him the anatomy of the body a few times in a way he understands so we can create a sense of knowing. Because of this, he now understands that helping with things like grabbing the remote or a bottle of water for me is a big help.

How NMOSD affects older children

On the other side of the equation is my 11-year-old, who has seen me go through all of my physical and emotional changes, and it shows in his character. I feel that he has matured in ways that not only have helped him. He can handle situations that many others his age can not. For example, he can handle more realistic conversations and help with chores around the house like laundry. He has even picked up an interest in cooking basic things, like scrambling eggs (with our supervision of course). He is very conscious of his feelings, emotional state, and things a kid his age probably wouldn’t even think about.

Healthy family communication

It’s been challenging for everyone in my house. We are still developing and creating healthy habits of communication, especially when we feel frustrated. The important part is that we continue to grow together and develop a stronger bond by continuing to develop our communication skills. It’s a positive thing to constantly check in with each other in the interest of all of our mental health, and I believe they really appreciate how my emotional evolution has helped them in developing their own senses of self.

What mental health challenges do you confront living with NMOSD?