10 November 2011

Red. Weighing it all up

On Tuesday, amongst a million other things, I had a good chat with one of my dermatologists. It was a bit of a debrief, I guess. We didn't talk much about my skin, other than the emotional and social impacts of it. Since hospital, and hospital again, my skin's felt ok. It's the heart and mind stuff that's troubled me. How to cope with stuff and when to take a step back. How to manage expectations of blog readers and people who seek advice from me. And whether the social challenges of ichthyosis should be healed above the medical challenges. We returned to what I wrote about in March - quality of life. So much food for thought.

One of the major things we spoke about was a breakthrough in medication. There's a new drug that has the potential to dramatically reduce the inflammation of my skin. Great! Not as many people staring at me. I can walk down the street in peace.

But. And there's always a but. Administering the medication is quite complex. And the other big side effects are that it would not reduce the dryness and scale, and also make me more susceptible to infections.

So we talked about how I can deal with the redness and the social challenges that come with that. But I can't deal with the pain of infections. It's. Just. Too. Sore.

And I mentioned something I hadn't thought about until recently. For most of my life, I didn't want to be red. Black or white or a skin colour that society is used to. Anything but a skin colour that makes people stare.

But it's now come to this. My redness is my profile. I tell stories, and have the face to go with the stories. People often want to get to know me because of how I look (rather than how it was - people not wanting to get to know me). I am remembered by those that matter. I now have to use my looks to make a positive impact. A bit like the way bikini models use their bodies. And maybe, for maximum impact, I could strip down to my bikini too.

So if I wasn't as red, how would I get messages across? How would I show someone what it's like to look so visibly different? And as a friend said to me, people may get the impression that  I've "had so much work done since I've been on TV". Hah!

Have you ever been given the opportunity to use a medication with such big opportunity costs? And have you eve been thankful for your illness or disability because it gives you a great life?


  1. Unfortunately it seems that every medication always has some sort of negative effect. I've endured 22 years of side effects, and now have more medical complications that have nothing to do with my initial disease. In turn, I take more medications to counteract the side effects of the initial medications.
    It always comes down to a risk/benefit ratio.

  2. Life is a very funny and complex thing. I haven't had chronic illness but every decade of my adult life I'm in my fifties now there has been major medical issues. These things do impact our lives. My husband and son have had lots of medical issues. So it is always there. So I do the things that have to be done and need to be done and the rest of the time I just live my life enjoying everything I can. I call it the ostrich method.

    Where the medication is concerned do what ever you can to become healthy. If you are healed you will still have your voice, and you will still have an understanding and compassion that most will never even imagine.

  3. RosieG is right life is a very funny and complex thing. My dad when he was 7 was hit by a tram and he lost his arm and leg.. He grew up with a prosthetic leg and half of his left arm. He didnt let it stop him he still lived a fully functional life - he married my mum and had 3 kids. I remember when I was old enough he told us all what happened (I never thought of my dad differently), he used to go and visit young kids who had lost limbs too.. to speak to them and show them that life "isnt over" and it doesnt matter who you are, what you have or dont have you can still achieve.

    I believe anyone with a disability, ab-normaility, or a difference - in society can really impact other people for the better but it really takes a special someone to be able to :)

  4. Good luck with whatever you decide Carly!


  5. That is a really hard decision Carly. I feel so fortunate that while ill health has had some massive impacts on my life, they have tended to be one off things not ongoing. I would hope that I would have the strength you demonstrate but I fear I wouldn't. Thank you for sharing everything that you do with us.

  6. I cannot relate, Carly, but I trust that you'll make the right decision for you. Trust your gut and also put your health and happiness first - that's my advice. Love xo

  7. Thanks for the support and advice :) much appreciated.
    I have not yet read the documentation but will give it a read and talk it over next time I see the dermatologist.
    So lucky to have a great team of specialists who understand both the social and medical aspects of the condition. So much focus is put on medical aspects, but social and emotional is just as important.

  8. The balance of identity is a tough one in this kind of decision. Your amazing battle and winning score to help people see your Ability around your disAbility, and your identity that has come with that, is so powerful and valuable to all people with disabilities. Verses the possibility of reducing the physical and medical impact, verses the side effects....
    Without your journey, would you still be you? And can you be you without your chronic illness.
    The decision can't be based on what people think when they see you, because your profile has become so much more than that. And well done for that! You are an inspiration!
    Has to be a quality of life answer - the complications of administration, verses the possible improvements in health and wellbeing. It's the pain management balance - does the means justify the ends.
    Good luck in your treatment planning. So great to hear that there are such holistic specialists out there that help with the full picture considerations.


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