Chronic illness: Let’s play pretend

I used to talk about the Facade of Well-being a lot. Because I used to think that I would wear this Facade of Well-being all the time. Like I needed to for myself and others. Like the world could not handle the fact I had a chronic illness or disability. Too much stigma. Too much for their brains to handle so I simply Had to fake it. Or taught myself to for various reasons. And, honestly, I had taught myself to.

Still, I do play a little game of pretend well-being for short durations. Like for this social occasion I will wear this hat, even if the hat doesn’t fit well that day.

Fake it till you make it

There is a game my brain loves to play called ‘fake it till you make it’. It used to play it all the time at work. Never won the game though. Because you want to pretend for the sake of others whether that be family, co-workers, or society as a whole you are functional enough to work. And in your brain you play this little, tiny game called I will push through until I see my doctor, or my specialist, or get this test, or get this medication, or this, or that or or or.

Anyway, never worked out well for me. Because the thing I was waiting for never happened or never worked. And pushing through always caused massive mental and emotional repercussions. The physical blowback was always intense.

I never would recommend it.

Let’s pretend

But fake it till you make it just another version of Let’s Play Pretend. Where I say to family, friends, the world as a whole ‘Look, I am going to pretend this thing here is better than it is or even doesn’t exist right now‘ and they are going to pretend the same thing. In a particular context or timeframe. Or for a particular symptom. It depends on what my brain decides I want to normalize and for when.

If I am good enough at the game no one will even notice I am playing it at all, but chronic pain and illness always has tells. Playing normal comes with a price. It comes with tells that different sort of behaviours you use to hide pain, like brain fog or gallows humor. I once had a boss ask me why I used to tell the specific jokes I did about chronic pain- the specific gallows humor I used- and honestly, the pain was getting to me so much it was about the only buffer I had. But it is difficult to explain that to someone. That you can’t stop the pain and every day you are doing things that actively make the pain worse, so humor is a way to adjust your mindset to get through the day with it.

So maybe it does ease social situations to pretend for a moment or so that I am better than I am physically. Maybe it does make things easier for a social occasion to do this as well. Makes me feel better sometimes to do this. I think it might put others at ease at well.

However, while let’s play pretend does in fact:

• Let me get through social events
• Relax in a social context for a short time
• Socialize better
• Forget for a moment physical problems to focus on others
• Fit into some social norms for a moment.
• I am not going to come across as a chronic complainer. Or ‘Debbie Downer’. Or things that in context people at events would not like a heavy dose of reality at. Which is important to me because I equally want do not throw around a bunch of chronic pain facts or reality around either. I want to be at ease and be mellow and have fun.

It cannot actually be utilized often or for long

Or when I am in a lot of pain. If you fake ‘normal behaviours’, as I like to call them in my head, too often you will do the exact same thing that ‘fake it till you make it’ does in a work context- put too much emotional and mental strain on yourself. So while it is great for short term social situations. Or hour or two long episodes of social situations. It definitely doesn’t work for longer durations of your life. Like with your partner, or friends, or work life, or society as a whole.

You can’t just decide, I’m not going to present with this chronic ailment ever because its just not working for me in society. Or that being disabled just isn’t socially acceptable so just going to fake normal around all the people and see how that works. Because it doesn’t work. Even with invisible illness and chronic illnesses.

I hate to say it but even if you play pretend all day long people who know you and even strangers may notice you are in fact disabled or have a chronic illness, even if that chronic illness is a invisible disability.

My chronic illnesses are both invisible and visible depending on the day, pain level and fatigue level. Sometimes I use a cane, sometimes not. Sometimes I present with drop foot. Sometimes not. Sometimes I can fake it with the best of them. Sometimes not even a little bit.

Other symptoms come and they go. So you are fine when you are out and about. Faking your wellness. Have your facade of well-being on. Next thing you know your hands are shaking and trembling so much it is impossible to hide. And people remark on it. Things like that are Tells you can’t predict. But it isn’t like when you are out and about your aim is to win the best fake it till you make it award. Or it isn’t for me.

At the end of the day

It is all fine. Okay. It is fine. I am a disabled person. There are going to be things people will notice. It is not the end of the world. So while I am not going to give a disability lecture when I am at social events. And I may play a game of pretend in social contexts, whether it works or not is debateable, honestly. The fact remains I am a person with a disability who has various invisible and visible symptoms. Sometimes I look fairly well and other times I look tired as all hell. Sometimes I have vertigo and have no balance. Sometimes I limp.

If I want to present myself or manifest myself a ‘normal’ as I can, playing a game of pretend I don’t have as much pain as I do, or that I do not have the migraine that I in fact do, or I am not as dizzy as I am in fact, because I want to socialize, that is because I want to just be at ease. I want others to be at ease. I want to relax. I want others to relax.

Expressing pain is not a weakness. Not in any context. It just means I choose not to do so at time. Leaving a social even due to pain or fatigue is not a weakness either. And I am aware as a person with a disability that I have to sometimes leave due to pain and fatigue. Resting is not a weakness. Pacing is not actually something we should consider a problem, it is something we should consider a lifestyle.

Fake it till you make it, harmed me immensely. This concept of a Facade of Well-being all the time is unhealthy as well. Let’s play pretend though, for short term social contexts is something I do often. So often I don’t even think about it. Like putting on a hat. It isn’t like pretending to be Well. It is like Pretending to be my best state of wellness at that time. Which is a distinction because I have Tells. My body is going to say, hey, look at this limp, or this shaky hand, or this balance problem spontaneously. That will ruin anyone’s perfect facade of well-being won’t it? No perfect acting award for me. It is more like I say, today I am going to pretend it is a really awesome pain day. Or a great chronic illness day. And go forth a socialize because I want to.

Chronic pain: Fake it till you make it