NMO Stigma: "She’s Faking Her Illness For Attention"
Recently, I found out from one of my friends that someone from my school had said that I was faking my illness for attention, when I first made my Instagram account to create awareness for this disease. I had never received a comment like that before, everyone in my circle had already seen how much I truly struggled with this disease.
Rude, damaging comments about NMO
For someone to make a comment like that, it takes them seconds to get over it like it is nothing. But for those actually having to live with this disease, we will never forget that sentence they had the audacity to say. It will run through our mind constantly.
As a human being, I cannot comprehend how people can make such comments, downplay people’s experiences and blatantly disregard their feelings. For me, no matter what my beliefs or opinions are on a certain matter, I will never make someone feel inferior to me. It’s just not how I was brought up. My dad taught me to be respectful to everyone, to be kind and understanding, and to never ever go out your way to hurt someone. Everyone has feelings, everyone has their own experiences in life and everyone deals with things their own way.
How stigma impacts people with NMO
So when I heard about that comment, I broke down straight away. I felt disgusting but also disappointed. I genuinely do not expect these type of comments from people because I personally would never think of making them. What hurt more was it was from someone who’s known me since we were children. But then I need to realize, as a 20 year old adult now, I’m going to come across a lot of people like this in my life.
I would never do anything like that for attention. As a young person with this kind of disease, I wouldn’t wish it upon anyone. This disease broke me, changed me as a person, practically killed all my hopes and desires, and someone has the audacity to say I’m faking it? The only reason I made my social media platform was to create awareness for this disease, to make sure other people with this disease feel like they have support, to feel like they’re being heard and listened to and to have support for myself. Most, if not all of us, were dismissed by medical professionals whilst we were suffering from the worst pain we’ve ever felt, all because they didn’t know what this disease was because of how rare it actually is.
Be cautious about what you say
The point is, you never really know what someone is going through and you never really know how a little comment can affect their mental wellbeing. That comment sent me into a dark hole. Always be cautious about what you say, always be kind and respectful and always empathize with people who are suffering from things you don’t understand. It makes it easier for us to deal with the pain this disease causes when people are supportive and not dismissive of our feelings.
Were you misdiagnosed, prior to being diagnosed with NMOSD?