You Don't Look Sick

I was traveling when a wave of NMOSD spasms hit me. I was standing when this happened, and I politely asked one of the passengers who was sitting in the handicapped seat to let me sit. She snapped that you look fine, so why the drama just to get a seat? My daughter responded angrily, saying well for your kind information my mommy is very sick, she is partially blind and has a chronic illness and she is not faking it - shame on you.

I did not feel offended because I am used to it. During my initial phase of NMOSD when I was still recovering from paralysis, I was using an assistive device and my illness was still evident.

But once I ditched them and considering I am a sharp dresser, I have a lot of tattoos and I don’t look sick at all (apart from my squinted eye and my wobbly penguin walk), people couldn't see that I am fighting the rarest of rare illness: NMOSD.

Social parameters of illness

Visible illness is when you are unwell and you look unwell. It's very evident to those around you. There are set social parameters and you are treated accordingly. No questions asked. People will not judge you. However, invisible illness refers to any neurological, mental, or physical condition which cannot be seen no matter how life-threatening it is.

People often assume that you are faking your illness. There are things that I have to face almost daily. One of them is being labeled as lazy. I have my good days, and then I have days when chronic fatigue overpowers my body.

My family members who are very well aware, still will address me as lazy head. I am often told that I become active and lazy as per my convenience and it’s just an excuse not to help us out. "You look so healthy." At other times my family, and friends will say are you on something. Brain fog is the best out of all. Yes, I am on something - I am taking a drug called NMOSD.

Measuring and gaslighting

The basic line of treatment with NMOSD is okay, but the flare-ups, pain, spasms, pins and needles, stiffness, and neuropathic itch are all different. No instrument can measure these. Just a basic question, from 1-10 where will you rate what you're feeling?

During the very initial phase of my spasms, my leg would turn and I would scream because it felt like someone was throwing boiling water on my leg. Doctors were helpless - they had given me enough painkillers and baclofen injection in my spine to the point I was told they could not do anything further. Another aspect of invisible illness. And sometimes because you look healthy, you are gaslighted when reporting symptoms.

Every day is different

Every day with an illness like this is different. There are bad days, then there are good days, and there are even days when you feel fabulous. Still, with NMOSD you never know what the next minute will bring you. If you are making plans (especially traveling) it has to be detailed. Still chances are it might get canceled at the last minute which is upsetting to people around you. Again you are told, "but you look okay don’t do drama and come." But I can’t, I just don’t have energy.

People have told me I have become grumpy, and when I talk about raised levels of anxiety and panic attacks, I get mocked. Telling me mental health issues are nothing. But are the same people aware that I am so anxious at night that I haven't slept in a while? That too many people make me nervous. But yes, I look okay.

What can I do?

I mean how exactly do you respond that you don’t look sick and it's all drama? Should I share the details of my pain, trauma, blood work, the medication that I take?

Should I spread awareness about NMOSD or should I simply ignore it? Will you believe me what I say or label me. I don’t want sympathy, pity, or unnecessary advice - so what do I do?

Some things are in my control and some things are not. And I just want to live my life without feeling drained and needing to explain myself. So for me, the best way to deal with “you don’t look sick" is to let them keep guessing and assume what they have to. I don’t react and try not to take it to heart.