Filter Out the Negative

There is a saying about tough times: you get to see the true colors of everyone around you. I had seen tough times, and I had seen how people reacted in those times. But being diagnosed with neuromyelitis optica spectrum disorder (NMOSD) was a real eye-opener for me in every sense.

Living with NMOSD is not a joke because let’s face it, NMOSD has layers to it. Every element is different, every warrior’s journey is different. There are challenges for us as patients and for the people around us. Medical gaslighting, being put on the wrong treatment, and a lack of information make the whole thing worse. We are gripped in uncertainty, fear, and loneliness.

NMOSD can be isolating

I saw the worst side of people who claimed to be my best friends. People made me feel bad, and they disappeared without a trace. I was labeled cuckoo, and people were ashamed to be around me because of my eyes and how I walked.

The initial period of isolation and lack of information made my life a living hell. Being in India made it all the worse. People around me were making assumptions, judging, and giving unnecessary advice. I was told I made things up for attention, and people would gossip.

I felt hurt and frustrated. The negativity around me was consuming me like a termite. My initial coping mechanism was to listen to motivational speeches. They would put my mind at ease for awhile, but depression, anxiety, and panic attacks would be back.

Leaving negativity behind

But then there was a flip side, the good side: the people who stayed, who encouraged me and helped me, and who are now part of my NMOSD journey.

I asked myself, what do I need to keep my mental balance? Even more importantly, how long will I dwell over the close ones who left me? Especially when I needed them the most. The ones that I trusted. How long will I grieve and let the emotional drama drain me? All of this was affecting my child too.

I discussed this with my mother, and the advice she gave me was: you are going through NMOSD, you don’t need energy suckers around you or anyone who will demean you or make you feel bad. If someone is feeling ashamed and burdened by your illness, then cut them out of your life and be a rock star.

Loneliness with chronic illness is scary. Stick with people who make you feel better, listen, encourage you, and accept the way you are.

Finding community

With NMOSD, you can feel like a burden depending on others. However, we are lucky. Lucky enough to be born into a time where we have online access to other people going through similar situations.

My dad encouraged me to look for an online group for support. That’s where my first switch happened. I found this community. I was able to communicate, gather information, and reach out whenever I needed. This was a confidence booster. The community became my happy space, my family. My husband encouraged me to write articles, to share my journey. I started looking at the funny side of my illness too, which made me feel even better.

Filtering my world

So the filter started. I started eliminating negative people. I became thick-skinned and silence was now my biggest tool. I started building a non-toxic group. My friends and my extended family did not call me every day, but they were there and they understood. My weekends were fun dates with my daughter or movie nights. My need for acceptance and to be understood was gone. I started enjoying life and made travel plans.

There are elements that we can't control, but there are ones that we do. We don’t need to be around negativity. We don’t need toxic positivity or any unnecessary drama.

Surround yourself with people who love you, things that you love but mostly love yourself the most. Be alone if that brings you peace, but filter out the negatives.