In 2019, the world seems to be more sensitive than ever. We push this narrative on social media to be positive and be ourselves, but then we’re immediately judged when we are. Why would I “dance like no one’s watching” when everyone is observing and criticizing? No matter how cautious and considerate I try to be, problems crop up frequently.
It’s as if everyone is living under a microscope. And this level of scrutiny has been getting to me lately.
I follow chronic illness blogger Natasha Lipman on Instagram. One of her recent posts caught my eye. She writes:
“Social media can be so cliquey – and certain behaviours in each community are valued over others. But I’ve always said, if you’re not hurting other people (or y’know not being any kind of -ist or -phobe), just live your life. We can disagree respectfully, we can experience our illnesses differently, and THAT’S BL***Y FINE OK?”
Her post inspired me to write this column about my experience writing on social media.
I’m done with trying to appease people and put a disclaimer on everything that I write. I feel caught in the middle whenever I post on a topic or write a column. I think that if my critics could see how much thought and consideration I put into everything that I write and publish online, they would think differently.
While it’s good to know who my audience is, I feel an incredible amount of pressure to avoid offending others. I’m constantly debating with myself about the topics that I choose to discuss or the language that I use. For example, should I use words like “fight,” “disease,” or “battle” to describe how I cope with my disability?
The FA community, the disabled community, healthy individuals, friends, and family can be passionate about their beliefs and perspectives (which is how it should be, and conversation is encouraged). However, it becomes a problem when the other person is incapable of two-way communication and insists that their opinion is the only valid one.
As Natasha puts it:
“ … they like to get snappy or passive-aggressive or rude, as though it’s a personal attack on them … that I’m not bendy like a cirque du soleil performer or that I prefer dark humor as a coping mechanism or I don’t believe I can cure myself with *insert bull***t quackery here* or fundamentally have a different personality that means the way I approach my health is different to them.”
I realize that a lot of my frustration has to do with my perceptions and the importance that I put on public opinion. But, coming from the stance of a writer who depends on website views and how I relate to others, I need to think of my potential audience. However, I write about my personal experiences, and I find it challenging to edit my work. Why do I have to walk on eggshells to share my story? If people are going to misunderstand my message and be disagreeable anyway, why should I put restrictions on what I write?
I know that I choose to be an advocate and share details of my personal life. I also realize that some people are going to dislike or disagree with what I have to say — that’s natural. But people need to stop taking things personally and understand that I’m speaking from my perspective. I talk about being authentic, but I haven’t been 100 percent genuine because I’ve had to be cautious with my words. The hypocrisy kills me sometimes. I don’t need everyone to understand me, but I want to be respected as a human being. I’m doing the best that I can.
Friedreich’s Ataxia News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.
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