Living with RA – don’t let your RA beat you! Toxic positivity

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Have you ever had a friend, a loved one tell you “You can’t give up!  You just have to be more positive!”  or “ Don’t say you can’t!  I KNOW you can do it!”  Or my personal favourite “You can’t let this beat you!”

I’ve heard it a lot.  It’s another way that people around me display their ignorance and lack of empathy and it’s about as toxic an idea that I can imagine.  It’s toxic positivity – underneath their Rah-Rah cheer squad, encouraging me to push harder, fly higher, BEAT THIS THING! Is the very simple idea:

You’re not trying hard enough.

This disease is your fault. 

You could be healthier if you wanted it bad enough.

Which, to my ears and my heart, is not very supportive. Is not very encouraging. Is not very compassionate, kind or loving.  Despite the authors of these comments thinking they are ‘helping’ they are actually hurting. And sometimes hurting very much.

I have very often heard “Don’t let your disease beat you”

Well, I’m here to tell you I have NEVER let my illness beat me.

The keyword here though is “let”.

I am sick.  I am chronically ill.  I will always be chronically ill.  I am disabled.  I will always be disabled.  My life will always revolve around how my body is doing today, and how my mind is coping with those limitations.

My illness controls my life.  You could say my illness has “beaten” me.  If you’re a particularly insensitive person, that is.

But I never “let” it beat me.

I have worked as hard as I can to keep as much function as I can. I have taken medications with horrible side effects, I have traipsed in and out of way too many arrogant doctors’ consult rooms. I have been demeaned and ridiculed and judged and accused of inventing my symptoms (consciously or not). I have exercised on days where most people wouldn’t move, I have followed insanely strict diets and eating plans…I have researched, I have read the studies, the personal accounts, the medicine both peer reviewed and anecdotal. I have spent a FORTUNE on proven and unproven treatments (to the extent that I am now broke, I whittled away my life savings).  I spent a fortune on mobility aids, modifications to my home, my car. 

And I have spent my heart and soul on trying to educate and inform those around me what symptoms I am living with, what limitations are permanent and which ones change day to day, and what I can and can’t do, and when.

And where does all of this find me, after 15 years of illness and almost ten years of disability?

“Don’t let your illness beat you.”

Seriously, if you only hear ONE thing today, dear loved one, hear this.

I did NOT “let” my illness beat me.

I have multiple, serious, degenerative, disabling diseases.  The way that degenerative diseases generally go, is down.  As in, the pain gets worse, the disability gets worse, my ability gets worse

That is, in fact,  the very definition of “degenerative”.

That’s why they put that word in the disease description, to let you know that it won’t get better. That it will get worse over time. Our aim is no longer to cure, it’s to slow down that rate of decline as much as possible. 

I didn’t choose any of this. And I certainly didn’t “LET” it happen.

It happened because that’s how it goes with incurable, degenerative diseases. 

I had to accept that or live a life of misery. A life of wishing, wanting and pushing my body too hard to achieve the impossible.  Does that sound like a good life?  No, not to me either.

Healthy-ableds don’t understand this, because they don’t want to understand this. They fervently need to believe that every disease can be overcome, that positive thinking and wanting it bad enough will get you wherever you want to go.

After all, we’ve been taught that forever, right?  Since we were very young “You can do whatever you want in life, you just need to work hard and believe you can!”  Our western culture of toxic positivity has burned that into all of our consciousnesses. And if your parents and teachers didn’t instill it into you, the media and every magazine rack you’ve ever glanced at will have.  EVERYONE knows this, so it must be true?  Right?

It’s not. It’s not even close to true.  It’s a fantasy. A fiction.  A fairytale.

And it was never meant to be a factual guide to healthy, happy living. It was meant to inspire you to do your best, to realise that a positive attitude and belief will get you further than feeling sorry for yourself with a packet of Tim Tams on the couch. 

It was never meant to be what it has become, a rod for your back, a way to victim blame those who cannot ‘beat’ their circumstances, whether that’s illness, or poverty or race.

It was never meant to be a way of judging, and finding wanting, some of the most vulnerable people in our society.

But the really hard to swallow idea is this: 

If the idea that you can do anything, have anything, be anything just by believing in yourself is not true, then you don’t really have control over your own life, over your own body.  And that’s a pretty terrifying thought for some people.  It was pretty terrifying for me when I confronted it. But I had to confront it. My body was breaking. I had to make friends with that idea to be able to live any life at all.

But the people around me?  Not so much them.  Their truth is, if they’ve watched me go from a fit, healthy, I mean VERY fit, very healthy, gym junkie, run 5kms for fun, nutrition-nazi, person, to someone who requires a wheelchair, someone who is largely housebound, someone who needed help to go to the bathroom, if they’ve watched that happen (and they are horrified) and they accept that its NOT my fault, that I didn’t “LET” it happen, then…

IT COULD HAPPEN TO THEM TOO.

If you accept that I went to bed one night, after a typical day of taking care of my baby and toddler, going to the gym, running 5km, doing seven hours of web development work, cooking meals and cleaning up and maybe throwing on a load of washing as well, if you accept that I went to bed that night living that life, and woke up the next day with hands so painful I couldn’t grasp a spoon, or lift the kettle to boil water for my coffee, if you accept that happened, and that despite everything I threw at my illness, medications, supplements, exercise, physio, acupuncture, diet changes, herbs, supercharged vitamins and of course an incredibly positive attitude at ALL times!…if you accept that despite ALL of that, I still got worse. I still deteriorated year by year, with the only difference being how fast I went downhill, then you have to accept that you could wake up tomorrow in the same situation.

And that just will not do!

You have to accept that not everything is curable.  Or fixable. Or beatable.

And you have to accept that we are NOT in control of every aspect of our lives, as is the mantra of the stupid wellness and self-help industries. 

You have to accept that you cannot “visualise yourself well”. Or rich. Or married to the man of your dreams.  Or happy.  None of it. 

None of it is true.  And if you’ve based your identity on the idea that you are the master of your destiny, I guess that’s pretty confronting.

Because not being in control?  Well, that’s really scary!  How can life really be that random?  How to deal with that reality?  The idea that you might get sick, go broke, or get hit by a bus tomorrow.  And there’s nothing you can do about it. 

Life is random. 

A far better mantra to live your life by than “Don’t let this beat you” is “Tomorrow isn’t promised.  Live every day to the full”.

That’s my mantra.  I do my best every day.  Some days my best looks like writing a blog post, making and shipping some bracelets, and a Pump class at the gym.  Other days it looks like not making it out of bed.  And NOT beating myself up over that.

My best looks different from day to day, and that’s OK.  A healthy person’s best does too, we all have those days when we’re just not feeling it, and we don’t get much done.  We don’t know when those lulls are going to hit.

Life is random.

We all know people who worked hard all their lives and remained penniless. We all know the superfit marathon runner who dropped dead of a heart attack during his morning jog at 42.  We all know that guy who never smoked a cigarette in his life who still got lung cancer and died three months after diagnosis. 

Bad stuff happens.  And it happens to good people, bad people, selfish people…it happens to people who are almost saintly in their generosity and kindness.

Bad. Stuff. Happens.

It happened to me.  

I did NOT LET it happen.  It just did. 

There was nothing I could do to stop it, I worked my ass off to slow the slide. I still work my ass off.  I keep working on it, every day.  It’s tiring, and sometimes it gets me down.  But its my life, and I’m doing the best I can.

And accepting that I will always be sick, is not “letting it beat me”.  It’s accepting the truth. Reality. It’s making the best of what I’ve got.  It’s living my best life.

My best life and your best life don’t look the same.  So please, stop trying to turn my life into yours.  Or your dream life.  Its not real. It never will be.  No, prince charming is not going to whisk me away.  No, he won’t turn out to be an eminent doctor who figures out the cure to my illness.  No, I will not live a fairy tale happily ever after.

I will live my life.  I will play the cards I’ve been dealt, to the very best of my ability.  And I will be as happy as I can be, while living within the limits of what my health throws at me. 

That’s what not letting this beat me really means. It means acceptance.  It means honesty about what I can and can’t do.  It means NOT slaking myself over the red-hot coals of expectation or trying to measure up to some Vogue centre-spread life.

And that makes me pretty damn awesome,

And I’m not going to “LET” anyone make me feel like I’m not doing enough to ‘get better’.  The idea that I need to overcome my illness to be happy, or to have your approval, is incredibly toxic.

There isn’t room in my life for people who refuse to understand my illness, learn about my abilities and disabilities, listen to what I’m explaining and most of all, accept me for who I am.

So don’t be that guy who tells me I can.  Remember the anecdote – “no amount of positive thinking is going to get my wheelchair up that flight of stairs”.  Keep that in mind at all times.

Remember some things ARE impossible, no matter how hard you want them, or how hard you visualise them or dream about them.

Remember that I’m a person who’s doing the best I can, living in very difficult circumstances. And if you truly want to help, to be supportive, to be kind, just ASK me what I can and can’t do. And if, and it’s a very big IF, if there’s anything you can do to help. 

Because maybe the best thing you can do is to do exactly what I have had to do – accept me, my body, my life, just as I am.

1 COMMENT

  1. When I was first diagnosed with diabetes a male acquaintance remarked about my consumption of TAB (yes it was pre diet coke) He said I caused diabetes because I was drinking saccharin, Of course many people drank TAB and yes a fair number had diabetes, but mostly they drank TAB after diabetes. Still, this statement reflected, really how stupid he was. In those days we did not recognize diabetes as an auto immune disease, but we knew it was at least in part familial but other than that the activation process was misunderstood. So we knew that unless some humans had a genetic predisposition to diabetes caused by TAB, then TAB was not the issue.

    At any rate i told him he was a fool and idiot. Yet these comments continued. If not TAB then maybe chocolate? Well what about the people in Roam before TAB and before milk chocolate. The stupidity just kept going on. Eventually I had to to tell him to go F*&$ himself.

    Stupidity lives in all sorts of places. Now pass the TAB and take a good bite of chocolate.

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