I have invisible disabilities. And the vertigo which is somewhat visible in the sense that I use a cane… if I do Not I look rather drunk and I do not like the judgments I get from that in public. I also do not like falling, thus the cane.

Anyway, disabilities on social media are rather deceiving. It is rare people do not put a smile on for other people or for the camera. Or use a filter to look better… or Alive.

Social media is our outlet often. When we can’t get out and about it is often our only way to interact with the world. Maybe we may post something honest about how we feel but not often and not too real because we are quite aware people do not want to hear that. So social media is very distorting. It is not really a view behind the curtain of a person with disability and their lives. A life that may be mostly in bed or on the couch and unable to function… just because you see them online doesn’t mean they can get around or do anything.

Invisible Disability- Hidden from sight on social media

No right answer

There is literally no right answer to how much you want to disclose about your chronic illness on social media. Just like there is no right answer to how much you want to disclose to someone you just met or an acquaintance. With invisible disabilities, since they are not visible for the Most part, enables us the ability to Conceal and Reveal to varying degrees of comfort with different people and according to the type of personality we are. As a reserved hermit I do not disclose to people I just met or know very little. I do to people I know well but often regret that… I just am a very honest person so it naturally comes out to people I know and trust extremely well. But that is my choice.

Online I make Lists so that I can do the Exact same thing. Disclose to all some minor thing on one day and to a select few maybe something for Depth on another day, because I know that group will have no judgement and will understand what I am going through. This gives me peace of mind. I have felt what it feels like when I share something and someone tells me something that makes me feel bad about sharing my experience. Makes me feel like I am complaining. Or tells me to do something that is So typical of people that do not ‘get it’ that I am wary of trusting them with anything Real again. I save myself that hassle. Unless it is memes for advocating then I will share them… I think sharing that is sharing knowledge and that is a damn good thing.

But each and every one of us has that choice.

Poem: Can you see?

So insert smiling selfie here

And presto… add a filter maybe. And guaranteed I had a migraine in this picture because I literally have one every day. Given I am wearing my migraine tinted specs that is very likely. Yet I can smile. I can add a filter and look alive. Put me in a group of people and I will smile there too. And likely be wincing in my head. I smiled and laughed at work… and trust me on this, I was in a crapton of pain. A Whole Lot of pain. Nothing worse than working with a migraine, staring at a computer screen in a bright, loud room trying to pay attention to customer after customer and not make a mistake while your head is exploding. Not my idea of funsies. But you do it. And then crash and burn when you get home. That was when I Didn’t call in sick, which unfortunately I did too often before I became disabled.

But when I post a picture on social media I do Not post Reality. This is a picture that makes me feel good about myself. And somewhat normal. And I like it. But it doesn’t represent bad days or functionality levels. Because no one wants to see a picture of me miserable even if that is really what is behind the curtain. And I don’t want to post it either. Because it focuses on something I try to cope with and get through… which isn’t a good way to distract myself which social media, for me, is.

I took this today for this post (actually Thursday). And changed the background, softened it, added a filter. And There… look more Human. But that isn’t real Either is it? But I want to Feel more Human even though I could barely walk today. Couldn’t function or get off the couch and am do dizzy it has taken all day to just do this post (Actually took me a lot longer to do this post… it was a very, very bad few days). And actually, in this picture even the best filter in the world doesn’t hide the fact I am having a Bad Day.

This is reality

Yep, no filter here. Still laid out as I was all of the day. Very dizzy, vertigo bouts, unable to get about without a lot of issues, extreme nausea as a result of the Motion I sensed Constantly.

But this isn’t the sort of thing I will post on my personal social media feed. This makes me look Sick. I am not feeling well at all but who wants to Look that way?

And that is the nature of an invisible disability, isn’t it? It is only invisible so far as we can fake it. It is only invisible as much as we Present Wellness. Behind closed doors… not so invisible.

We put on a facade on days we can get out and about for various reason but one simple one is to boost our own selves to give us that sense we can function through what we a) want to do b) have to do. But there are many reasons for putting on a facade. All of which make us rather invisible.

Same goes with a social media persona. We are inclined as much as anyone to present ourselves a certain way on social media. We have More freedom in that realm of existence than in reality. Often reality does not allow for the freedom to express much about our chronic pain or chronic illness or disability at all- doesn’t want to hear it- doesn’t understand it- doesn’t care about it. But on social media I can post a meme about depression, pain, fibromyalgia- whatever I want on my page because it is My page.

I may even be more inclined to mention a Really severely bad day. Maybe. Not always. Not often. Because that sort of thing is better said in chronic illness groups where people get what I am talking about and can relate. Not on my feed where I feel like I am ‘complaining’. And when I do share on my feed I put it o a List, and that list is of people who are my friends with the same chronic illness I have. Once again, know your audience. Other people? I just feel like sharing is perceived as ‘negative’ or ‘complaining’.

Also, just like in ‘real life’ we have a whole lot of reasons for just avoiding the topic of how we are Physically doing. Sometimes it is just easier to cope that way. Sometimes we do not want to deal with advice or sympathy or anything… we just want to deal… period.

I'm Fine

Distorted reality

No one can see how many days you are laid out and non-functional due to pain, or fatigue or other symptoms. No one can see how hard it is for you to do small things and how much recovery it takes you. No one sees the Bad Days.

So I choose not to disclose much. I know that. And therefore people do not see much. But that is the truth for every single person that uses social media. We see a Fraction of that life. A glimmer and a shinny one at that. Not the hard stuff. Not the struggles.

Middle of the night migraine

And why do I mention this? Stigma

We are and Can be judged based one or social media content. We can be seen as faking it. And not disabled enough. SOLELY because we post a picture of us smiling. Or laughing. Or outside. Or, How Dare US, on a vacation.

Well, what crap that is. None of us post all the horrible sick selfies we Could. All the posts about horrible we feel or how little we could do. All the time. How constant that would be. All the Minutiae of chronic illness and disability and pain people do not want to hear. No one wants to hear all that. It sounds horribly depressing to ME. And we want to be social and distract ourselves no dictate how crappy we feel every day. So how dare we be judged on this illusion of social media that distorts reality?

That doesn’t mean we should post more or less than we are comfortable with… we are doing nothing wrong or even different than any other person out there. It means we should never be judged based on it. Yet I have seen it.

See more here

The Chronic Pain Paradox: Talk about it? Keep quiet??
Effects of social isolation
Fibromyalgia awareness and stigma

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6 thoughts on “Invisible Disability: Hidden from sight on Social Media

  1. Oh dear Nikki, how well I understand you. As you said above you don’t feel like telling people how you feel. They get fed up with listening to the same story again and again. I have seen in in my friends who aren’t my friends anymore because I can’t do much. I wish people didn’t ask how I am because that means I’ll be lying to them. I also hate pity. I don’t want to be seen like the woman with the horrible disease with no cure. I hate that I’ve become dependent on others. I hate asking for favors. I also know what it’s like staying awake from migraine because I had to get up in the middle of the night for a painkiller. I hate being in this endless fight. I keep reading other people’s posts and some are fully functional with fibromyalgia. I’m housebound with very painful legs that can’t walk. I wonder why am I not getting better? Still on doctors waiting lists hoping someone will help. Still in pain, still suffering

    Liked by 2 people

    1. I hate pity too. Sometimes I’m told I keep things inside too much but then maybe that is because I just don’t want to deal with how people react. I just want to deal myself and that is hard enough. I’m still on a waiting list myself and I think it will be a long one. I think the both of us are going to be stuck in the house for bit just waiting.

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  2. On the positive side I hear from friends new treatments are being tried for fibromyalgia and neuropathic pain. I’m sure I’ve not tried novel treatments. You have to be accepted in only a few centres that offer them and under the supervision of highly experienced doctors. I am still fighting and hoping that one day there will be better treatments for us.

    Liked by 1 person

  3. This is so relatable. The difference between the image we present to the world and what we are actually experiencing can be a huge chasm. I don’t think there’s an easy solution, but I think as a community of individuals with experience of chronic illness, pain and health struggles we can share our reality without pity but with genuine empathy and understanding. Pity makes me feel really uncomfortable as well, and I’m glad to hear it’s not just me!

    Liked by 1 person

    1. Yes there is such a huge difference between reality and what we are willing to show about that reality. You are right, in communities and groups we can share a whole lot more without judgement and that does help. Yeah, pity makes me feel very uncomfortable. I would rather just … not have people know at all.

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