Chronic Illness is Comedy Gold.

(The death-breath of life.)

Finding yourself face-to-face with a suspicious short and curly in a public loo is comedy gold. Okay so I'll admit, in the moment it's not all that hilarious. There may be much swearing and shaking of weak fists at the perverse nature of The Universe. There may even be a tear or two. But there is a moment when you move from overwhelming despair, wipe the best-left-unidentified goo from your cheek, and onto a moment of laughter. For example, that time in Myers during the pre-Christmas madness when I suddenly realised that I was lying there on sticky white tiles, as a distorted It's beginning to look a lot like Christmas, spilled out of the crackling speaker overhead. A kind of hysterical laughing fit takes over at that point. But it's laughter nonetheless. When you've spent a large portion of the last 8 years becoming overly familiar with the communal stench-filled porcelain dotted throughout the state of Victoria, you learn to laugh.

There's a huge component of black humour involved in illness. If you have a chronic condition you quickly learn to embrace that humour. When you become ill you find yourself thrust into a bizarre world that becomes more and more Monty Python sketch and less and less normality, as time goes by. You are one of the unlucky few to discover that medicine doesn't have all the answers. Depending on your disorder you can discover it has none of the answers. And the actual living with illness is so far removed from the clinical details that it can seem like you have been diagnosed with the wrong condition. You can either embrace the ridiculous nature of your new environment or fight it. And for many like myself, the former is a far better option. But laughing at illness can make others uncomfortable, and frequently confused.

I've always had a dry sense of humour and since becoming ill it's taken on a life of its own. I've found that sarcasm doesn't always translate, especially across doctor's desks, or across international borders. Odd times I've made a joke and by the look on the face of my specialist you'd think I just told her I wanted to eat the stapler off her desk. It's a mix of confusion and worry, often accompanied by a slightly uncertain laugh, and tends to be quickly passed over. But even amongst family members and friends it can be hit and miss. I'll write a tweet or status update which in my head is dripping with sarcasm, but many will take it verbatim and send me concerned messages. If I end a passage with "Living the dream" odds are the preceding line or paragraph was sarcastic. Yes waking up on the bathroom tiles with a concerned Great Dane trying to French kiss me is foul, but it's also funny. And the fainting while trying to simply go to the loo, is kind of beside the point. It's not fun, but it's white noise by now. And really if you can't find the funny in being given the rancid breath of life by a giant dog while you try ineffectually to beat her away with your weak arms, you have missed the point.

And I should give a shout out to the poor pharmacy assistant who innocently asked me if the compression stockings I was enquiring about were for an elderly relative. I probably shouldn't have responded by saying that they were for me and that it's what all the girl's were wearing to turn on their elderly clients. Personally, I found that hilarious. Her, not so much. 

My husband and kids get it. They joke about me dying and them inheriting my vast fortune. This horrifies my parents, but leaves us pissing ourselves laughing. But then again we are the family that tormented each other by playing Burning Ring of Fire during our respective colonoscopy preps. They too have lived with my deteriorating health for the past 8 years. Whilst other people flit in and out they are the ones who have lived it with me, picked me up off the floor and wiped the drool from my mouth. They've seen it all and they too use humour to get by.

If you can't laugh about the full body floss (the dual fun of a colonoscopy and endoscopy) what can you laugh about? When you're neurologist is telling you bondage jokes during your tilt table test you have to giggle. When you manage to snort your Florinef into your left nostril rather than swallow thanks to an ill timed cough it is rather funny. When you're trying to put on your constrictive granny compression stockings and lose your grip and punch yourself in the face, that is worthy of laughter. When you are about to head into your pacemaker surgery and your husband makes a joke about The Borg Collective and his hopes that you'll turn into 7 of 9, you snort laugh. And when you realise that you're not going to get better you make jokes about your non-existent inheritance and the fact that your husband has no chance of scoring himself a hot replacement wife after you're gone. 

Because sarcasm and gallows humour is a fantastic coping technique. You need to be able to laugh at illness. To put it in it's place, and make it bearable.

It doesn't mean that I don't cry or feel overwhelmed by everything at times. It doesn't mean that it's not hard living with a deteriorating body, especially at the moment. But it does mean that I can write numerous blog posts about my porcelain lover's pine-fresh breath while a new medication is making me vomit repeatedly (see my short lived dalliance with Mestinon up in the Treatments section). And, after 8 years, I can still laugh.

I may be living a life part pain and sickness, part I Love Lucy and part The Machine that goes Ping, but the bizarro world of chronic illness is filled with comedy gold my friends. Comedy gold.

Michelle

Remember to head on over here to donate to my Clicking My Heels For Dysautonomia, raising money for the Greg Page Fund for Orthostatic Intolerance and Dysautonomia research, at The Baker IDI. Thanks to the generosity of many we've already raised over $2,000, keep donating and hopefully we can reach $10,000.

This is NOT funny.

I'm tired. Tired of having the same conversation, about the same issues. Year after year after year. Back when I started this blog in 2009 I was discussing the hurtful comments challenging the validity, or existence, of illness. I have banged on about the whole myth of the look of illness and challenged perceptions about what constitutes disability. I have written so many posts on the topic that I couldn't even pick one to link up. And still, nearly 5 years after I first pushed publish, pictures like the one below are doing the rounds of the Internet on a regular basis. And people continue to find them funny.

When I write an article many readers tend to relate to the issues I discuss. They have had the same experiences and the same reactions: hurt, anger, frustration, an overwhelming desire to resort to violence. But in many ways this is preaching to the converted. Those who read predominantly share the same views on these topics. But in the wider community it seems that little has changed. 

This meme is doing the rounds, again. It ended up on Mr Grumpy's timeline recently, despite the poster knowing that he has an ill wife. It has ended up on the timelines of numerous fellow patients, posted by friends and family who know their situation. And it hurts.

The posters have not taken the time to think about the message such a meme sends to friends and family who are living with illnesses that don't meet the limited ideal portrayed in the media. It also says a lot about how society continues to view disability and illness in this day and age.

It says your illness and your experience is a joke. When they laugh at such an image they are essentially saying you, your illness, your challenges, pain etc are meaningless. When those who use a wheelchair but can still mobilise independently over short distances see such an image it is hard not to take offence. We know the mental and emotional challenge it can take to simple accept the need for a wheelchair. We know that a wheelchair means difference at an age where most are simply out living life, starting careers, studying, having children or travelling. We know that every time we head out into the world someone will find our life a joke. Or, if you are unlucky enough to be this woman, you and your situation, become a beacon for global for mockery.

I can say we shouldn't care. 

I can say we should simply ignore this meme and others like it.

But sometimes no matter how stoic we are, such attitudes cut deep. 

And frankly, why the hell should we have to put up with mockery and disrespect on top of having to live with disability or debilitating illness?

Those who have not personally experienced serious or prolonged illness; who have never known the challenges of disability or seen how they affect a loved one, seem to still find the whole experience as nothing more than fodder for laughter.

What is lacking in our culture that many feel they have the right to mock, judge, or police others, for circumstances they don't bother to understand? When did compassion and minding your own damn business, get replaced with picking others apart for sport?

The idea that the only viable illness is one that lends itself to clear external markers, such as loss of hair or tubes and bandages, is so incredibly incorrect, as to make it laughable, especially given that figures for so called invisible illnesses are as high as 1 in 2 in some countries. The idea that disability is only seen in the use of a wheelchair, something unfortunately perpetuated by the most commonly used symbol for disability found on blue and white stickers worldwide, excludes millions of people in Australia alone (currently estimates are that approximately 20% of the population are living with some form of disability, only a small percentage of those are permanently in wheelchairs). The idea that only those with paralysis use wheelchairs is equally damaging to a large percentage of users who, like myself, can walk very short distances but are frequently unable to stand or walk for any substantial distance, or depending on the day, unable even to walk one or two steps. 

Without my wheelchair I would rarely leave my house. Without my wheelchair I wouldn't shop. I'd never go to a gallery or a market. Or even attend many medical appointments. I have even been known to use my limited energy to push myself up from my wheelchair to grab a product from a higher shelf. I could very easily have been the woman in that picture.

If those who laughed at the above picture, or mocked others in the community for standing from their wheelchair, took the time to speak to the person in question they may find that they are recovering from surgery or illness or have Dysautonomia, Myotonia, Multiple Sclerosis, cancer, lung disease, heart failure, Ehlers Danlos Syndrome, Arthritis, Chronic Regional Pain Syndrome, or a host of other disabling conditions. 

But should these people have to explain themselves to the mockers? 

Should they have to lay bear their medical history to receive a basic level of respect?

Should we all wear coloured vests or carry neon signs stating our sick credentials to be treated with dignity?

The meme above, that continues to make the rounds on the Internet, is nothing short of insulting and reflects a basic lack of empathy and character upon those who both continue to share it, and those who laugh or say nothing.

I am tired of having to justify my existence to the wider community. I am tired of friends having to justify the use of mobility aides such as wheelchairs. I am not here to educate every idiot who finds the above meme funny. I have enough on my plate to deal with on a day-to-day level. I don't need the added burden of playing the role of teacher every single day, day-after-day, year-after-year, for people who don't bother to think of how their attitudes affect those of us who have been in that woman's position, or that woman herself. Or who don't realise that they, or someone they love, may one day develop an illness or acquire an injury that will put them in such a position.

This is not about a lack of sense of humour, as is often the accusation made when people like myself question such jokes. Many of us in the chronic illness and disability community have well developed senses of humour. It is what helps make our lives bearable. We find the funny in the most unfunny of experiences. But we are using our own experiences, we mock ourselves not other people. We tread the hard path, the pain, the fear, the tears and the doubt, and we have the right to use our experiences. Others do not.

It is me who cannot stand, who collapses on the floor, who vomits up food on a regular basis, who cannot always hold a glass, and who cries into my pillow from the often unrelenting pain in my body. It is me who is often unable to walk from my bed to my bathroom and has undergone numerous painful and scary medical tests. And it is me who needs to use a wheelchair to access the world and doesn't meet the simplistic perceptions of others. 

I have paid my dues and can laugh at my experiences. But when able-bodied people post memes like the one above, when they mock, or make derisive comments, they are misappropriating and minimising my experience and the experience of many others, for a cheap laugh.

It is nothing short of insulting and offensive.

Just as we shouldn't put up with sexist, racist, or homophobic memes, we shouldn't put up with this ableist crap either.

I am tired of having to explain myself. But I am more tired of simply sitting back and putting up with discrimination sugar-coated as humour.

If you post, share, or laugh at memes such as this, you are an arsehole. If you see it and say nothing, you are giving your tacit approval to that attitude. And I for one am going to call you on it.

Michelle