The invisibility of illness

Cystic Fibrosis is an often invisible dis-ease. Because my body is working as it should be right now, I’m not underweight as I was pre-transplant. Weighing 38kg was certainly not invisible, and it came with stares and whispers of anorexia and bulimia. I know people who suffer from eating disorders and would never say, ‘if only it was that simple.’ Because it’s not. It never is. That’s not to say my body is free from the ravages of C.F. Even after transplant, I STILL have C.F. There is no cure. I’m buying time – coming up sixteen years in August, and I’m so bone achingly grateful for my donor and her family.

We all have scars. Some are visible; others are seemingly silent and buried like a restless river just before the bank bursts. I am a quilt. My upper chest is a patchwork of scars from CV lines, port-a-caths, chest drains, my transplant and other invasive therapies I’ve survived. My belly has a nasty scar from where my ileostomy (poo bag) was. The first thing the surgeon said when he saw me after the surgery was, ‘I just managed to miss your tattoo’, but it juts out from where the rainbow begins and is lumpy and misshapen because I ended up with an infection in the wound.

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I was still grateful. I have marks on my body from other medical stuff like skin grafts, but for the most part my dis-ease is invisible except when I have a line hanging out of my neck like this:

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I wrote the following post last year when I was quite sick. It’s called ‘It’s not chemotherapy, but …’ … it’s crushing exhaustion, aching bones, rigours, a barely there appetite, heart palpitations, diarrhoea, nausea, seizing muscles and I can’t seem to get enough sleep. Most mornings it’s a struggle to even sit up in bed, mix my antibiotics and push them through my CV line. ‘Antibiotics?’ I hear you say. Yes – antibiotics. Whenever I get a lung infection and have to have a very obvious CV line indelicately threaded into my jugular and stitched onto my neck, people look at me and assume the worst. I’ve heard people whisper, ‘oh, she must be on chemo,’ or ‘She must be on chemo where she doesn’t lose her hair – how wonderful’, ‘I wonder how long she’s had cancer for?’ and worst of all, ‘I wonder how long she has left?’

For the record, I don’t have cancer – not this year, anyway. But when people find out that I’m on an antibiotic regime and not chemotherapy, they immediately express their relief and tell me that they’re glad it’s ‘nothing too serious’. I guess it’s not ‘too serious’ until the antibiotics stop working and I die.

Right now, I’m on three antibiotics: Meropenem, Cephalothin and Tobramycin. Twice a week I have blood tests done to see if my Tobramycin level is too high, and for the last week, it has been. High Tobra levels can send me into kidney and liver failure and affect my hearing to the point of going permanently deaf. Before my transplant, my levels were so high, I was falling over from vertigo, headaches and tinnitus. That’s not before the nausea, diarrhoea and rashes. And that’s just one antibiotic.

Tobrymycin has left me a shell of who I was seven days ago. I’m barely getting around my unit and the need to throw up is never far away. I can’t go shopping because this lethargy has me on such a short leash, and I’m afraid of shitting myself in public, so I had to have my groceries delivered last night. I was too tired to put them away. Again – Tobra is just one antibiotic. Meropenem and Cephalothin can also send me into renal failure and I’ve had consistent nausea and diarrhoea. For the first four days of IV’s – and even now – I couldn’t do a solid shit, was dosed up on fentanyl for pleurisy and had violent sweats and the vomits. But hey … it’s not chemo, is it?

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We must always suspend our judgment of people. I may appear well with my face and body, but I’m not immune to pain, suffering or adversity. No one is. I’m blessed to have a great ‘shell’ (seriously, you should see my legs!), but many others have visible differences that are excruciating to live with, lest people literally picking them out of a crowd because they look different. If you knew what the inside of me looked like, or under my clothes with my patchwork of scars, I would stand out like a scarecrow in a poppy field.

Like me, people survive, live their lives as best they can while still kicking  ass and taking names. I just ask this of you: treat everyone you meet with respect and kindness. Everyone deserves that. The photo below was taken in 2007 when I had cancer surgery and had to have my bowel redirected in the form of an ileostomy. It was taken two days before I grand mal/tonic clonic seizured myself into a coma and ended up in ICU and on the edge of life. Never a nice place. I will always be beyond grateful I survived – scars, skin grafts, designer vagina and all.

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45 thoughts on “The invisibility of illness

  1. Here I am whining about dealing with 6 weeks of meropenum and 6 months of Bactrim. I had no idea you were dealing with this right now…. you describe invisible illness so beautifully. No one can see my PICC so they would never know that I’m fighting a dangerous infection. As for the ‘nothing too serious’, everything is serious when you’re totally immunocompromised!
    Really hoping all the awful drugs work And that you’re on the road to recovery very soon
    Cam xox

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    1. Hey gorgeous! I’m not sick – it’s ok! I wanted to let my readers know that not all disability or illness is visible. I wrote the other post that I shimmied in last year when I was sick. Six weeks of Mero would have me basically suicidal – I don’t know how you’re doing it. YOU are amazing. Whine away, and I’ll happily listen – IV’s suck!! xoxo

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      1. Seven days to go (and yes I’m counting)! It’d better finish next Tuesday so I can fly to Brissy next Friday. Stupid damn germs 😳

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  2. I remember talking with my children when they were young and one of them asked why a person who wasn’t handicapped was parking in a reserved for handicapped spot. We had a long chat about illnesses that don’t “show”. That was a long time ago and I hope they have not only never forgotten but passed it on. I’m glad you did this post to remind people. Judgement is ALWAYS wrong,
    Carly your strength and courage never fail to inspire me. I always look forward to your posts and learn something with each.
    Another thing I tried to teach my children, KINDNESS IS CONTAGIOUS, SPREAD IT AROUND!
    xoxoxo

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      1. As I said to Lea in my last comment, Rowena – you choose your own destiny. You can choose to sit in a corner and bitch about your life, or you can get up and make a conscious choice that you’re going to live as best you can – no matter what the circumstances. Thanks for your kind words – right back at you 🙂 XO

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      2. It was funny yesterday. My broken foot is still recovering and I’m wearing the boot around less and less and starting to feel more confident. However, there are a lot of hazards around the school and so I usually wear the boot up there. So, there I was yesterday morning with my boot on my foot. Walking stick on the ground standing on a step stool to photograph the school kids with the local radio station who’d broadcasted the breakfast show live from the school. I must have looked half mad but it was quite stable. I was tired afterwards but I had a blast..especially watching the teachers beat the kids in the tug of war. I have never seen such determination. So much for letting the kids win!
        I love photographing the kids and waving to them and it makes such a difference when your school can be such a positive community!

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      3. I feel incredibly blessed that we managed to find each other in this big, crazy world. Across continents and oceans, you give me so much love, encouragement and sustenance, Lea. I love you dearly and cannot wait for the day when we eventually meet XOXO

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      4. As do I Carly! You are the most incredible, strong, compassionate woman I know. I would dearly love to meet you in person and shall look forward to that day! XOXO

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      5. And there’s some toughies in France, too 😉 I do think that when you’re born with a dis-ease or disability, you can go either way – the ‘why me?’ road, or the ‘why not?’ I’ve always chosen the ‘why not?’ option, even as a little girl. I never once questioned why I had a terminal illness – I just got on with shit. Just like you do, m’love XO

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      6. Carly, you are too kind. They say when life hands you lemons… actually I’ve always preferred limes! 😉 XOXO
        Actually, I have finally accepted the fact that I’m tougher than I had always believed I was. Replacing a lifetime of brainwashing with more positive messages is more difficult than one might imagine. ma chèrie! XO

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      7. I’m so glad that you’ve realised that you’re tougher than you thought you were. You’re an incredible human being, mother and woman and from what I know, you’re one of the most bloody resilient and strong women I’ve never met. Because we’ve both had our shit to contend and deal with, it’s actually nice (not the right word, but I don’t have my thesaurus head on today) to be able to share my innermost thoughts with you and to have that sense of mutual trust we share. Onwards and upwards, mon cherie! XOXO

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      8. As a child, shame was attached to any mistake real or perceived. In owning the real errors I made, strength grew. However, it took an incredible amount of time and inner-work to begin to own it. Abusers take that away from us and we have to reclaim it. Despite an arduous journey, it is worth the climb. As you say, onwards and upwards and for you, the world shall be your oyster. XOXO

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      9. I’m so sorry you had that attachment as a child, Lea. As we grow older, we realise what real mistakes are and then we can grow with them in their context, if that makes sense? I was lucky to never suffer abuse, and I know that I am of a minority when it comes to this. So while I had other shit to deal with, at least I could trust the people (often strangers) who looked after me. I do remember coming very close to being abused when I was about six. I was in hospital, and there was a physiotherapist who was chasing me around an old bus that used to sit in a park just outside my ward. He so badly wanted to get me alone and I had a really bad feeling about this guy (I can STILL see him, clear as day), so I made sure that I wasn’t alone with him, but at one stage we were seated alone in the bus and I just instinctively knew I had to get out of there. I was lucky to have that choice. Big love XO

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    1. I’m so sorry to hear about your cousin and my apologies for only seeing your comment now. Thank you for your kind words – I will always do my best 🙂 How old was your cousin? Sending love your way XO

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  3. Always an important lesson. I also feel like I get judged as having cancer when people see my hohn in my neck. I have a 4 year old son, and the looks of pity I get when he’s with me are really tiresome. It’s “oh that poor girl, having to fight cancer in front of her little boy.”

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    1. My apologies for only responding to your comment now. I’m having a fangirl moment because I think your blog is kick ass! It’s *always* the fucking cancer thing. If you look sick and you have an IV in your arm/neck/chest, you simply must have cancer. It’s genuine ignorance which can’t be helped, but I like to think that most of the time these people’s thoughts are coming from a good place XO

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    1. Laura, your baby girl is blessed to have been born with so many new treatments that I never had. Everything is so different much more positive now 🙂 How is she doing and what’s her name? I’ll put her into my meditations xoxo

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  4. You are one bloody amazing kid. I suspect everytime we share one of our fabulous tea ceremonies that you have a brave face on. You and your hidden scars don’t fool me. But I love that you can be the girlfriend you are no matter what “shit” your going through. Until out next sipping moment lots of love and support for the stuff you don’t talk about. Xxxxxx

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  5. I am quite intrigued about your tea sipping ceremonies. I collect antique and vintage tea cups and try to have a cup of tea at least a few times a week out of them after I drop the kids at school. I’ve photographed them in all sorts of interesting locations as well. I find the whole thing very therapeutic.

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    1. I’d love to see some of your tea cups! My little tea drinking ceremonies I do alone. It’s ‘my’ time, where I can sup and slurp and no one can judge me 🙂 Tea is a cure all – at for me, it is XO

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      1. I will have to do a post and show off some of my photos. I’ve taken the tea cups to all sorts of place including Byron Bay lighthouse and the beach in Byron. Stay tuned. xxoo Ro

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  6. I really loved this post and relate to so much of what you write. I broke my foot recently and the concern people have expressed about the foot has been staggering. I think they have noticed that I haven’t been well but didn’t say anything. Didn’t know what to say. That’s because they now tell me how well I look and how I look much better than 6 months ago. I wrote a post about the pressure to recover quickly from the psychological trauma whereas I’ve been encouraged to rest, take my time and not push it when it comes to managing the broken foot. I wrote this in relation to the recent siege at the Lindt Cafe in Sydney. Here’s the link: : https://beyondtheflow.wordpress.com/…/the-struggle-to-heal…/
    You are a woman of such amazing courage and such an inspiration! Thank you for being you! xx Rowena
    PS I am reading about your journey in reverse so I’m putting the pieces together as I go. You have really been walking along such a difficult road but as I’ve noticed with my friends with Muscular Dystrophy, you are able to experience joy and shine your light and encourage others even when the going is excruciatingly tough xx Rowena

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    1. OW! I’ve never broken a bone (apart from my sternum, which had to be deliberately cracked), so OW. My ten year old nephew broke both of his arms in November and it was just awful.

      Some people don’t know what to say and often bungle it, but I always remember that people get flustered with unusual circumstances, so they’re easily forgiven. But. And here’s the but … I’m so with you on psychological trauma like you describe in your great post on the Sydney siege. Psychological trauma stays with us long after our physical scars have faded. It’s a lot like grief. Some people seem to think that you should ‘be over it’ after a few months or a year or within a certain time frame, but there’s no expiry date on grief or other psychological trauma.

      Thank you so much for your kind words, Rowena 🙂 You’re one tough lady, too. Big love to you XO

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      1. Hi Carly,
        It’s a shame we are connecting over war wounds but we’re also writers, warriors and we get out there re make the most of it. I have sprained my ankle so many times that I kept going even though the pain was intense and my foot did feel like it was in two bits.
        I love what you say about there being no expiry limit on grief and psychological trauma. So true you can have flashbacks and nightmeres over some things and then mysteriously just get over other stuff straight away. I have just ordereda book called “Resilience” by Australian journalist Anne Deveson. Her son committed suicide after having enough of severe schizaphrenia. She has recnetly been diagnosed with Alzheimers and was interviewed in last weekend’s Good Weekend, which was where I heard about the book. It should be good and I’ll try to keep you posted . Big love back to you and if you’re in Bangalow at the moment say hi to the Choux Choux for me! Big lobve back to you too!! xx Rowena

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