Invisible illness: Hiding in plain sight

 

Here is the good thing about an Invisible illness: you can hide it

Here is the bad thing about an Invisible Illness: you can hide it

Invisible Illness: Hiding in plain sight

When it is good-ish to hide an invisible illness

So I walk with a cane most of the time now… so people can see, hey, that person is disabled in some way. But in some cases, it is good to just not have people know that.

  • Ever meet someone and just Not want them to judge you on your illness? Or not talk about your illness? You can with an invisible illness. You can just not mention it and there you go. (with my cane random people ask me why I use a cane. Just randomly ask me.) So you can have a normal conversation about things without them ever knowing your private medical issues unless you bring it up. And that is Refreshing.
  • You have the choice on whether to mention it to an employer or not. It is within your rights not to mention it unless you desire specific accommodations. Therefore, if you do not you do not have to worry about not getting the job due to discrimination and stigma.
  • You can choose in any situation how much to Reveal and how much to Conceal. I may say, yeah, I get wicked chronic migraines… but not mention I have fibromyalgia which is harder to explain and I don’t want to get into it. But migraines impact my capacity in the moment, a lot, so I may mention them so people understand my light and sound sensitivity. Or why I wear my tinted specs. I choose though. I choose what I want to say and what I don’t want to say and to who I say it to.
  • I also choose the depth of what I say. I can go light or I can go deep depending on the situation and person. Not everyone deserves my story. Not everyone needs it. Not everyone cares. Sometimes a passing mention may be needed. Sometimes a lot of depth is needed (doctors and insurance companies). I choose that depth. I am stoic and private… I don’t like to tell people how deeply pain impacts my life. So I don’t.
  • We can choose to mask our pain and illness for functionality reasons. Like for work. I have worked in sales and in customer service. And being miserable and snarky isn’t the way to roll in those positions. Nope, smile and laugh, smile and laugh. So a facade works well and since people cannot see my pain I can hide it. On those days where it can be hidden. I mean, we can only hide so much.
  • We can mask some of our experiences from our loved ones so they do not see how much we suffer… when they can’t do anything about it. If we so choose.

You may not see my pain

When it is bad to hide and invisible illness

  • It can lead to a lot of feelings of isolation and feelings that people will just never understand what you are going through… if you’re very stoic and do not reveal what you are actually Going through
  • If you do not communicate effectively with your spouse or significant other then it can lead to resentment that they do not get your pain or illness because you have not explained on those bad days why you cannot function and on better days where your limits are.
  • We can get used to underestimating our pain and suffering because we don’t want to be seen as ‘weak’ or ‘exaggerating’ or ‘making a fuss’ and this is very bad when it comes to medical professionals who will then assume we are not in that much pain and not really suffering. Yeah, they think we are exaggerating Anyway, but if we undermine ourselves And they think we are exaggerating… then they Really do not comprehend our level of suffering. Same goes with a disability and insurance companies… we MUST be blunt and honest or we will not be believed. Our silence hurts us in these cases. A lot. We have to say how much it really hurts and how much it really impacts us.
  • We have to have peeps or ways or online groups or support groups we can truly express the depths of our experience or it is just never expressed. And when it is never expressed it can feel so lonely. So isolating. It can magnify the experience if we never, ever share it. And sharing it with those that get it can really help us a lot with that feeling of being alone.
  • It can become a burden and a barrier. It can make us More invisible. We ‘look fine’. So we Must be Fine. Having an invisible illness is difficult because it cannot be seen. And what cannot be seen can be doubted. A lot of the stigma we get is because of the fact it cannot be directly seen or understood. In pain? Well I can’t See it or Measure it… so maybe you are faking or exaggerating or complaining or weak. (when people see my cane… they see disability. Without it, they see Nothing about the level of pain I am in. They would never know without me telling them and even then… they don’t ‘get it’)
  • It can become an issue with stigma. We did something one day so how come not another day? If we hide it all the time people do not get the variability of illness. And when they do not understand that they are more likely to think we are faking it when they see us modestly functional one day and then not functional the next.

So yes we have the choice of revealing and concealing details of our illness when we choose to. We can hide it when it suits us, on the days we can hide it. But by its very nature of being not seen this is where all the stigma comes from. It cannot be seen and therefore it cannot be understood fully.

We can create a perfect facade to function in life with illness and then that perfect facade bites us in the ass when we don’t look or act or behave sick enough. It is like a damn paradox. We can’t win it. We have to function somewhat so we have to mask our pain and symptoms… and then we don’t look sick enough so we must not be or must be faking. I mean seriously. It is enough to drive a person nutbars. Then we explain our situation and impact it has on us… well then, we are just complaining, whining and often seen as exaggerating. The stigma hits us on one side… and then the other. You can’t even escape it with an invisible illness. Damned if you do, damned if you don’t.

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See more posts:

The Facade

When confronted with the lazy stigma

Invisible illness: The thing that hides itself
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7 comments

  1. Hi Nikki,
    I have spent many years hiding my Fibro, but not the endless migraines. You are so right on this once again! It’s so much to explain & than there is the judgement. I find the reaction is discomfort & lack of understanding. Thanks, you give me so much to think about.

    Liked by 1 person

  2. I always look fine on the outside even when i am extremely ill…and when i tell people that, they think that i am making it up…my anxiety and sudden panic attacks that happen during disputes with very negative people is the hardest to deal with….

    Liked by 1 person

  3. Incredible post Nikki. I will be printing this out for a few of my ‘sorry, not sorry’ loved ones because I’ve been damned if I do, damned if I don’t for 20 years. That is a damn long time. I often think hearing about what we go through from another source is helpful. I do agree finding an outlet is imperative as we can’t hide all the time. Damn if we don’t try! Who in their RIGHT MIND wants to fake being chronically ill??? Certainly not anyone with a desire to LiVE a full, happy life… I mean, have you met me? Seriously. Will be reposting too, when I get to my ‘big girl’ desk top computer. Right now, lying in bed hooked up to a machine to treat my fake illness. Oh, I mean invisible! 🙄

    Liked by 1 person

    1. Thanks! I must say it was hard to write because I have been low on vertigo meds till my next doc apt. I’m going to have to take next week really slow in posts I think. Just because I won’t be able to function well for my invisible illness… that if someone said was fake I would beat the crap out of them with my cane.

      Liked by 1 person

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