Wednesday 4 September 2013

Sick? You're doing it wrong.

If one more person tells me how to be sick, or, more specifically, how I'm doing it wrong, I may just....Well, I really don't know what I'll do as I have all the get up and go of a soggy tissue. But I'll think up some really snappy Looney Tunes-type scenarios, complete with over-sized anvils from the Acme company, that I'll replay over and over in my head.

Why, people? Why?

Why do you care how I deal with my illness?

Why do you think you are more of an expert about my experience than me?

Why do you instantly think I am doing it wrong?


There are numerous books that purport to tell me how to be sick correctly. Talk shows and magazines have interview after interview of people doing sick correctly. Family, friends, acquaintances, and strangers, fellow patients and healthy folk alike, are all lining up to tell me how to be sick correctly.

There are the "if only" brigade. If only: I ate better, prayed more, exercised every day, went to their homeopath, checked out my chakras, saw another doctor, stopped seeing so many doctors, took this medication etc.

There are also the outright rude brigade. I have been called a "fool" or an "idiot" on more than one occasion.

There are the amateur psychologists . You're depressed, you're anxious, you want to be sick, if you were more positive you'd be well etc. All decided after a two minute chat.

The "my second-cousin twice-removed's next-door neighbour's uncle's dog-sitter's dental-hygienist, had what you had and they're better now" brigade.

The list goes on. But all drive me barmy.

I've had a clanger running around my head for a while now:

"Are you depressed? Don't become one of those depressed, chronically ill people." 

One of those people.  

God forbid I should feel a wee bit down about my situation. You know the whole life-changing illness malarkey. Daily pain. Daily vomiting. Daily lack of functioning. How dare I? Damn you, Michelle. Pick yourself up woman. Don't go down that road. Next thing you know you'll be hanging out with politicians, and people who kick kittens. You know, those people.

Because feeling down, or dealing with Depression, when you are chronically ill is apparently wrong.

I have been stewing over this comment for a few months now. At the time I mumbled my way through an incoherent set of words that could have been essentially summed up as a simple, "No". After the fact, I beat myself up for all the things I wish I'd said, instead of being foiled by a combination of shock and brain fog. And then I got angry. I may have ranted at the long-suffering Mr Grumpy for a while and let off a few exasperated, FFSs. But I always wish I had the guts to ring back and say my piece. Instead, I took the less confrontational road of spending my nights ruminating on all I wish I'd said.

I've been trying to think why it affected me so deeply. I think I have finally boiled it down to 4 main points.

1. As Mr Grumpy pointed out at the time, I have more than enough reasons to be depressed. The last seven years have sucked. I have had seven years of pain, loss and increasing disability. I have pretty much earned the right to be sad, or angry, or a generally pissy person if I wanted to be. I am not, and have never been, the kind of person who cries into their cornflakes over piddly things, eg because they don't have the latest iPhone.

2. Depression isn't a weakness, or a failing of character. It isn't a choice. It is an illness and it effects millions in society. Depression is incredibly common in chronic illness communities, with an estimated "28% of people with a chronic physical condition also [having] a mental disorder". Even irrespective of developing a chronic illness, it is estimated that 1 in 5 women,, and 1 in 8 men will experience depression during their life. So is it really that unrealistic to expect that a person with a chronic illness may also be dealing with depression? If, for example, a person with Dysatuonomia also had diabetes would we go around saying, "don't become one of those diabetic chronically ill people"? Perhaps instead of criticism, there could be support? Or maybe a simple, "how can I help?" Such a negative attitude is a sure fire way to get a person to hide what they are thinking and feeling, for fear of judgement.

3. So called 'negative' emotions like sadness or grief aren't inherently bad. They are a normal reaction to what is often an abnormal or stressful situation. We have a range of emotions for a reason and some are more appropriate to certain situations than others. Being permanently perky can be just as unhealthy as permanently pessimistic. For example, laughing with happiness at a sombre funeral, not exactly appropriate. Laughing with happiness at a comedy club, pretty appropriate. If I were to stuff down my sadness every time it reared it's head, how would I ever process it and move on? Saying I'm over being sick, does not instantly make me depressed. Should I say I am absolutely stoked to be sick? Don't shut me down, with a flippant comment about not becoming one of those people.

4. I have worked damn hard to not be depressed. I had counselling for a year when I first left work and I felt like my life was crumbling. I took the steps I needed at that time. I now manage my stress and my general mental health, as I once managed my career. I am an inherently positive person, but I also work every day to find the joy in life and to keep myself moving forward. And I work double-time when this illness throws another curve ball my way. I have bad days but they are far outweighed by the good. To have all my hard work dismissed without even taking the time to find out how I am coping, is just rude. How about a high five for how well I am managing, despite a bucket load of obstacles?

I am always astonished when someone enters my life for 5 minutes and they not only have to  judge how I am managing, but tell me after that same 5 minutes, all the ways I am doing it wrong.

I have lived with serious chronic illness 24 hours a day, 7 days a week, for 7 years. I'm still laughing and putting one foot in front of the other. That simple fact says I must be doing something right. Please respect that.

Ask, don't assume.

As they say, that just makes an Ass out of U, but in this case, not so much, out of and Me.


Sing it, Frank!


  1. And just because a psychiatric drug "may" help treat a chronic health disorder doesn't mean A. It will always work or B. That I have a mental health disorder to begin with. Especially if it doesn't work for me. Oh and I'm still waiting on my cookies and that Unicorn, lol!

  2. So true!!! When my health took a turn for the worse 2.5 years ago my mum thought I was getting depressed and convinced me to see a psych. He gave me the very best advice anyone has so far with this stupid thing - it's ok to be fed up, sad, annoyed and completely frustrated every now and then, it's ok for it to get to you but it certainly doesn't mean you are depressed. People living with chronic illness have a lot to deal with so it would be a miracle if they didn't get upset every now and then but there's a HUGE difference between 'having a moment' (or week) and having depression. Been there to both things and they are hugely different. After hearing that I stopped beating myself up about getting sad occasionally and about not always having a positive outlook - it made a huge difference!
    I don't understand why people feel they have the right to comment on things like this. It's rude, inconsiderate, shows a complete lack of understanding and is completely unwelcome. And I'm sure if so and so's homeopath was that amazing we'd all be cured by now ;)

  3. Funny, I just wrote a little ranty thing myself earlier this evening on a similar vein ( How people handle their illnesses is such a personal thing... and a certain thing does NOT work for every single person. Everyone's body and situation is different, so people need to grow some manners and be respectful about these things. I'm learning so much, dealing with chronic illnesses, about how to be polite and respectful about intensely personal topics... something I never learned growing up. So now I like to give people the benefit of the doubt, because I know I have been a bumbling oaf so many times myeslf!

  4. Goodness, Michelle, do I adore you and your perpetually spot on, candid, witty, insightful, uplifting, and endlessly relevant (to my own life) writing. I agree with each and every point you made and find the idea of finding and trying to embrace joy in the face of CI an especially important one, which I do on a daily basis without fail. Even if I have to search long and hard for it, I will find some positivity in each day I'm blessed to be alive (despite my health's best efforts at times otherwise) no matter what, and celebrate it in my heart, outlook on life, and interactions with others.

    ♥ Jessica

  5. Michelle,

    I am generally a lurker here, but felt that I had to post today out of gratitude. Our lives are amazingly similar, though I am about a year behind you in your acceptance of illness. I just wanted to let you know that your posts have been life-saving for me on many occasions. Through your words, my husband has come to understand our life so much clearer and, though he could still easily share the title of Mr. Grumpy, has grown in compassion and empathy. Having been bombarded with rapid-fire health milestones in the last month, I have been losing my mind wondering whether I am doing this all "right." I continue to put one foot in front of the other and carry on as well, but I wanted to let you know that your posts are often pushing me, gently nudging me, or sometimes dragging me kicking and screaming to do so. Thank you.

  6. Oh MIchelle I hope you realise how much help it is to read that you are going through, and feeling, the same things as fellow suffers are, speaking from my personal point of view only of course! One of the problems I experience with this condition are the self-doubts that creep back time and time again when being 'put-down' by those who should be the most empathetic and helpful. Yes, even from the people who usually 'have my back', and although I completely understand (after the 'event') how their frustrations with living with someone living inside this bldy condition can sometimes get the better of their caring nature, it seems to hurt even more than when a new GP tells you that "it's your posture that is causing you stomach problems", you need to stop slouching! Aaargh!!!!!!! You sound so much like me 'pre-Dys', and I too try really hard to keep a smile on my face when I really feel like climbing onto the roof (that Would be a feat!) and screaming "Stop the world I want to get off" xxx Tricia

  7. I also have a blog that I just started. it will also share ny life with dystautonomia. check it out. maybe you can relatee<3

  8. I love your perspective/humor on things, so I'd really love to hear your feedback on this post. (And maybe share it? Woman, you are a MEGA social media influencer.) It's not spam, I swear ;) I had an arse of a nurse and I want to use it to facilitate a discussion about the issues in healthcare overall.

  9. Love this post! If only I was baptised. If only my mum and dad were not black and white. If only I drank Noni Juice. If only I prayed. If only I was not so stupid in the sun.

    Your humour and assertiveness is so wonderful Michelle. If feisty, intelligent and being a great writer were attributes of being sick, you're doing it right.

  10. I was all riled up and ready to get all belligerent about some fucker messing with MY Michelle and thinking they have even the slightest idea of what you're coping with and then...I read Anonymous' comment. And now I'm all weepy. Because she nailed the beauty of you. And then I was just a little bit glad you had that shitty experience so you could write something this amazing and touch a whole mess o' people with your magic. I mean, I still would like to kick that other fucker soundly in the nut sack, but now I might help him stand up afterwards. Might.


All who are lovely enough to comment should be showered with cup cakes, glitter and macarons. I promise to use my spoon bending mind powers to try and get that happening for all who are lovely enough to share their words. Those who go the extra step to share posts should really get a free unicorn. Or at least the gift of finding the shortest and quickest line at the supermarket on a regular basis. xx

Note: only a member of this blog may post a comment.