Living with Heart

Ableism and The Bold & the Beautiful (yep, you read that right)


Profound words from Zende Forrester on The Bold & the Beautiful – “You know, you never really see sick people in this country, they’re always in hospitals or in their homes – out of sight. It’s almost like you can forget about all the hurt in the world.”

Well, never let it be said that I don’t plumb the depths of TV for meaningful quotes! And yes, it is a sad and tragic fact that I watch the Bold and the Beautiful. But I ONLY watch because I have a dear friend – who shall remain nameless – who also watches. Now this friend has a PhD in Literature, so by association, my watching the show is somehow elevating me to a more intellectual level. Now back to the quote.

Quite a powerful message that Zende Forrester is putting out there but really very true. (I think that’s his surname – but you never know with this show). A large portion of society just doesn’t see us and they are happy with that. It’s like we are physically invisible as well as having an invisible illness.

The quote makes a generalised judgement of what a ‘sick’ person should be doing. If you are sick you should be in hospital, in your home or out of sight. This attitude makes my head want to explode!!!

If you are really sick you should have a walking stick, a wheelchair, a plastered arm or no hair. There needs to be something physically present for you to be really ‘sick’. I can see all your heads nodding as you read this – been there, heard that and you’ve got the t-shirt to prove it. Yeah, it’s getting a bit tired.

How many times have I heard “But you look so amazingly well”. I’ve heard this from Physiotherapists, Exercise Physiologists even GP’s – health professionals that should know better than to push there ableist schtick onto me. If I don’t look ‘sick’ then I must be well. Damn – I wish someone had told me how easy it was to be ‘well’ – I would have tried it years ago.

I’ve come up with some witty responses to the above – things like “Yeah, it only takes $500 of medication a month for me to look this way” – but what I really want to say is “take one step in my shoes and you’d be on the floor mate”.

I am very lucky to have friends and family that mostly understand about my Psoriatic Arthritis – but do they? How can they really understand when I play the game and put on the front to make other people feel comfortable? To make it easy for them to understand? So I really play the ableist game. I put on the lippy, I put on the bright dress and I use valuable energy to flat out dazzle my friends. (Yeah – I know we went through this the other week and the dazzling could still be a warped construct of my mind).

I pretend – and I’m OK with that most of the time. But I do go to some crazy extremes.

For instance, if I need to take pain meds when I’m out, I look around and make sure no one is watching and surreptitiously start riffling through my ‘special’ medication bag. This ‘special’ bag resides inside my handbag and I can access any drugs in there by touch alone – which is a super advanced skill that has taken me a decade to perfect. I know the shape of panadeine, the roundness of panadeine forte, the little curve of codeine. So no one sees my ‘special’ bag but me. (Except for HotY – who sees all)

Once I have the meds in hand I do a quick sleight of hand bag to mouth and take a swig of my precious water. Going to all this trouble to disguise the medication I need to keep me functioning – is really just me pretending to be well. And that makes everyone comfortable. They can look at me and think “I know that Michelle has psoriatic arthritis but she looks really well so I’m going to just not think about it.”

This is something I struggle with – but I’m also OK with most of the time. I don’t want to burden my friends with the absolute reality of my illness – so I just pretend when I’m with them because I need the connections.

Friendship connections are really important for me and I do have amazing friends that I can share parts of my disease with – but I still do the ‘drug sleight of hand’ – even with them. There is only one dear friend – an ultra marathon runner – who has ever asked me what was in the ‘special’ bag. Showing her the contents was a bit like walking naked in a shopping centre…but she still embraces me even having seen the contents.

So what would happen if we all stopped pretending? I don’t know and I’m not sure that I want to find out. I don’t want my disease to intrude any more into my life than it already has, constantly creeping in like a surprise high tide carrying debris. I’m happy to use my energy on feeling content, on learning and living. If that means I’m playing the Ableist game – well, I can live with that.

Thank you for reading this. Thank you for taking time to listen and to hear. Thank you for seeing my life through my joint perspective.

Michelle

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