The trouble with ‘cures’

My good friend, writing peer and all round genuinely awesome woman, Carly Findlay has today written for Daily Life about her experience with false cures and how, at the end of the day, she doesn’t want to be cured of her rare and painful skin condition Ichthyosis. Like Carly, I’ve never wanted to be cured from Cystic Fibrosis. I’ve wanted to be free of it, which is different to a cure, but this dis-ease has shaped me into the person I am today and I’m proud of my ability to survive against often insurmountable odds. For The Two Carlys (like The Two Ronnies, but hotter), life is a gift.

Carly was kind enough to ask my opinion about how the lure of false hope can be a soul destroying experience – not only for the person suffering from an illness, but for their families and friends. You can read Carly’s article HERE and her blog can be found HERE where she writes prolifically about disability rights, appearance diversity, her personal battles and victories, and other very important issues, including her impending wedding – YAY!

Here is a photo of us taken last year when we met in Melbourne. It had been a long time coming. We share far more than our names.

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12 thoughts on “The trouble with ‘cures’

  1. Hello to the Two Carly’s…C1 and C2,
    This is a topic that has intrigued me because I would do anything and feel like I have done just about everything I can to manage my muscle-wasting auto-immune disease and while I’m not holding my breath for a cure, I am grateful there is treatment. I am also conscious that a close friend of mine who had fairly similar symptoms to me, was diagnosed with Motor Neurone Disease and given an estimated 2-3 years to live. Her daughter is only 9 and the disease is having a terribly impact, although my friend is incredibly courageous and tenacious.
    I refer to my own body as being “bung”. It’s not broken but it certainly seems to have a mind of its own. I have always lived in my head a lot so I don’t live in my body quite the same way other people do. My head space is much more important for my identity. It’s my home.
    I have noticed quite a difference in how carer’s respond to things and a carer’s role is quite different to the person’s and it is particularly hard for carers when their child has a life-threatening or terminal situation. A parent will naturally do whatever it takes to protect their child and I can’t imagine what a disease you can’t shoot, punch, kick etc would do to that natural instinct.
    I can feel your angst about false cures, raising false hopes and I guess in this way the “it is what it is” approach does allow you to reach some sort of acceptance and cope.
    While cures for medical diseases and conditions are I guess the ultimate destination, we should never lose sight of what it means to have treatment and how that can hopefully extend life and quality f life without killing you faster or making you glow in the dark. Some of my treatments fall in that camp. I am very grateful that I have been able to access a wide range of treatments and am still alive 9 years later. My response to treatment hasn’t been ideal so it’s been good to have further options and not be told: “there’s nothing we can do”.
    All that aside, as a community, we have to ensure we don’t see disabled people or people who are “different” for whatever reason as “broken”. These perceptions can have real consequences in terms of people with disabilities not reaching their potential or not being given equal opportunities. Everybody deserves a fair go!
    xx Rowena

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    1. I’m sorry it’s taken me so long to get back to you, Rowena. Your ‘head space’ comment really resonated with me. My head space feels like my home, too. It makes me feel safe and fortified, and impenetrable from negative forces.

      I really believe that having options gives us hope, and I’m so glad that despite your suffering, that you are still of this world when you weren’t supposed to be 🙂 And it really is about quality, isn’t it? Everyone deserves quality of life and quality of care. And just because I have a life limiting illness doesn’t mean that I’m broken!! I’ve been told by medical professionals and friends that I’m one of the most ‘together’ people they know. Just because I’ve been bent out of shape a few times doesn’t mean I’m ‘defective’ in any way, shape or form. I think the opposite is true – I’m stronger and more adept than most, and can handle pretty much anything life throws at me, and I’m sure you’re much the same. Big love to you XO

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      1. It’s interesting that there’s that paradox where the seemingly weak are actually mentally, emotionally and sometimes even physically stronger than others and it should be a wake up call to those that are glued to their couches watching the box.
        Since I wrote my comment, I’ve had an interesting experience because I have been well and this gave me the headspace to follow up on my daughter not eating. From a management point of view, this has been quite tricky. There is such an opposition to childhood obesity and yet our daughter is underweight, which is considered an attractive, very desirable thing. I could lose some weight so I feel a bit awkward trying to sort out whether there’s a problem and if so what to do about it and I don’t want her to think there’s something wrong with her. After all that wishy washy thinking and medical tests which suggested a problem, I started to look at her calorie intake and realised she’s getting about a third of her daily calorie intake. I’m picking her up from school and she’s floppy and weak. So we’re back to the paediatrician tomorrow. I am now having to argue that this isn’t who she is but something else and we need to find a way to ensure adequate nutrition, which I’m sure in her case, should be possible. I don’t think it’s something too sinister but we just don’t know at the moment.
        I have found it so much harder watching her go through tests I’ve had myself without too much trouble and I hate seeing someone I love suffer..or knowing they are.
        xx Rowena

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  2. Hi Carlies,
    After reading your posts, I came across this on my myositis support group FB page. I’ve read it before but thought it might go well with your post and that others might not have read it xx Rowena

    I am often asked to describe the experience of raising a child with a disability — to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this…
    When you’re going to have a baby, it’s like planning a fabulous vacation trip to Italy. You buy a bunch of guide books and make your wonderful plans… the Coliseum, the Sistine Chapel, Gondolas. You may learn some handy phrases in Italian. It’s all very exciting. After several months of eager anticipation, the day finally arrives.
    You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland!”
    “Holland?” you say. “What do you mean, Holland? I signed up for Italy. I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.” But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay. The important thing is that they haven’t taken you to a horrible, disgusting, filthy place full of pestilence, famine, and disease. It’s just a different place.
    So, you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It’s just a different place. It’s slower paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around. You begin to notice that Holland has windmills. Holland has tulips. And Holland even has Rembrandts. But everyone you know is busy coming and going from Italy, and they’re all bragging about what a wonderful time they had there. And for the rest of your life you will say, ” Yes, that’s where I was supposed to go. That’s what I had planned.”
    And the pain of that experience will never, ever, ever, go away. The loss of that dream is a very significant loss. But if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

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  3. Two amazing powerful women and both named Carly! As a parent, I am all too aware of the guilt that is involved when your child suffers. I couldn’t help her, the doctors, not the ones who were negligent, couldn’t help her. The only thing left was to let go. It was the hardest thing I have ever done. Despite her young age, her eyes told me everything including what I must do. XOXO

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  4. I frigging love this. It seems to be an unpopular opinion in our crowd, but I think it shows a level of realism that is too often lacking. Superb article and thoughtful Ted talk by the way. I was wondering how that went earlier, glad I got a chance to view it.

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    1. Thank you so much – that means a helluva lot coming from you! I was crunching through your blog last night, and I LOVE your writing and the way you so intelligently and eloquently present your arguments/debates etc. I was especially interested in your salt lamp post. While I have one and love it’s warm and relaxing glow, I was never sure about the whole ‘negative ions’ aspect, so thanks for clearing that up 🙂

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