Tuesday 22 March 2011

The Sickie Friend Slam-Dunk

Now this one is tricky.

It's not a "poor me" post - I got over the slam-dunk years ago. It's not a "people are rubbish" post - no-one can understand what they don't yet know. It's a "solidarity spoonies" post. Only spoonies will understand it or even perhaps completely believe it.

(A spoonie is someone with a long term illness or disability, often one that can't be seen or easily explained. You can read about it here http://www.butudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/ )

Chronic illnesses come and go. Some weeks they're bad. Some weeks they rage through your life, scattering pain and misery beyond comprehension. They leave you bed ridden or writhing in agony or fighting for survival.

Other weeks, you might look just like everyone else. Of course, that doesn't mean you feel like everyone else, but it means you can make a fairly good stab at pretending. You can "play well" with a few naps and some carefully targeted lip gloss.

Chronic illness often affects young people too. The teenage lottery of life can play it's genetic give-away cruelly, at any time. Just as you're meant to be partying and studying and falling in love it rolls up with callipers or sick bowls or chemo.

Nothing is more at odds with nature than someone who is young and sick. Our Darwinian evolution cannot compute. Millennia of genetic experience tells us, somewhere deep in our souls, that this "cannot be right."

And it scares us. A whisper creeps into our hearts : "That could be me."

At first, a sick friend is a brave friend. New acquaintances gape at your drug drawer or hear your medical stories with horror. They marvel as you dislocate your own wrist or shove a needle deep into your own thigh. The trouble is, after a while, a sick friend is a boring friend. You can't make that long-planned spa weekend or 30th birthday party or meticulously planned wedding. You stay in bed too much, you can't do the housework or eat the meal a friend has carefully cooked for you.

You forget birthdays. (Though if anyone had asked, you probably couldn't remember your own name that day). You can't work and have to make the best of it with a wall to wall diet of daytime TV. If you're really lucky, like me, your partner eases quietly into becoming your carer (again) and has to bring you meals and cups of tea and change your sheets and take over the childcare.

Weeks go by, months even and you disappear from view. No school runs, no days out, no trips to the park, no weekends away and you don't even notice. Your focus has shifted. All that matters is "I must survive this" (again) You don't notice that the phone has stopped ringing or the doorbell is quiet.

Later, when the crisis has passed a little you take stock : Alive? Check. Roof still over head? Check. Friends? Not so much.

Every single time, someone, somewhere will have slipped away. You realise they haven't popped in for coffee. You realise the phone never rang. Soon enough you hear why and though it hurts less over the years, it  never quite stops hurting altogether.

A few days ago, it occurred to me that "School Mum 1" and "School Mum 2" were being a bit weird. Despite it being 3 months since my operation, it's only really now that I'm able to walk to school or tidy up or go out for lunch again. The School Mums are not close friends, they're acquaintances. Nonetheless, we've had some fun, helped each other out and dried each other's tears.

As the story unfolded and I did a little digging, I found my 2011-post-op-Sickie Friend Slam-Dunk.
The gossip is familiar. I'm lazy, I "play on" being ill. I treat my husband like a doormat.
I never tidy up, my house is a mess, I neglect my children.

Ouch, ouch and ouch. "Ouch" because though I know it doesn't mean anything, every criticism is based on a little truth. When I'm sick I do appear lazy. My husband does have to do everything, I can't tidy up or look after my kids. All of my secret fears and guilt exposed and confirmed.

Happily, other school Mum's stepped up. They knocked out of the blue and took my kids out for the day. They called now and then to see how I was. They supported Dave at the school gates with his dark circles and face etched with worry. My neighbour regularly appeared with home made Gumbo or bags of supplies.

So why am I writing about it at all? What does it matter if some thoughtless, selfish Ms Average judges me?

Well, on a personal level, it doesn't matter at all, but on a national level it matters very much. If people who know me and see me vomit and see the tube in my nose or the needle in my leg decide that chronic illness is just an excuse to lie about the place like Victoria Beckham on a Malibu beach, then what hope do I have of persuading the cabinet that people like me should be considered in the benefit system? Or helped into work? Or treated with compassion and understanding.

The sickie-friend-slam-dunk always reminds me just what an uphill battle that is.


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  2. Thank you! I thought it was just me!

    PS. They might think I lie about the place like Victoria Beckham on a Malibu Beach, but that's probably because I don't invite people into my house. Lying about in a filthy house is more like it.

  3. It's hard when people form an opinion on your lifestyle and state of health without really knowing details.

    Harder still when it appears the whole UK are making a judgement call on all the sick and disabled claiming benefits!

    Sue, all I can say is keep doing what you're doing, you give a voice to many who have none and you draw attention to the plight of these people. Do do all this with remarkable wit and good humour! I love you loads. XXX

  4. Brilliant. Human nature is a cruel thing, and this is only one of its nastier aspects. Being a nurse caring for patients with chronic illness, I have come to realise that healthy people become afraid of chronic illness, and don't know how to help. Maybe you should just ask them? Give them little jobs to do, so they feel useful, and get past that barrier of fear? As for the benefits system...dunno!

  5. Jude. you're probably right, but it gets harder and harder to ask when you've been let down.

    Real friends get though it all somehow with you though and you value them all the more.

    Romi - Awww, shucks, thanks.

  6. I have bouts of severe depression. Bouts that, over the years, have chased away most of my friends and mean that I don't really try to make new ones anymore. I remember, during the darkest of dark times being told by a life long friend that I was lazy, selfish, a bad mother, unfair to my husband, a bad friend, a drama queen, etc etc. My own siblings seem to be unable to understand why I cant just pull myself together and get on with it. So if family, childhood friends cannot understand or accept, what chance the general public?

  7. Unfortunately we have experienced the same reaction from people, even life long friends do not want to know. They make excuses for not getting in touch sooner and give silly explanations like, I've been too busy. One friend recently told me that she stopped coming to see me because she could not bear to see me like this. Well I'm so sorry, but if you cant bear to look at it how do you expect me to live with it? We all have to find the strength from somewhere so why can't you!

  8. All I can say is you say it all better than I could, reading your blog is like being reminded I'm not going insane! I needed to read that after a friend described a current state of mortal fear due to an extremely dire longterm diagnosis as me being "in a funk".. alot of the time no hurt is ment, they purely just dont get it, it is alot about their own lack of being able to deal, as minx said, and its really upsetting. ..but the being abandoned definately does hurt, I try to focus on the people who do stick around and push out of my mind ill-informed external judgements but the reality is they exist, and you get to hear them down the grapevine. I live in fear of being seen in a wheelchair by any of the gossipy outskirts to my social world and family, because the pity is sometimes worse than ignorance. And because people do chinese whispers, and you end up getting emails from people who've heard you're terminal or something when actually you're chronic but degenerative! It can be really hard, and like you say when it's bad being compis-mentis (sp?!) enough to even figure out whats going on at all is pretty hard going. I hope to cope better in the long run, but most of my spoons go into trying to not fall out with anyone in my immediate support structure, keep ontop of my medicines and appointments and stuff, and fighting for benefits (- 1 year in fighting for dla or social services assistance to hire help at this point, seriously disabled by illness 3 years now) anyways, thanks for keeping up the mission I know it is for you to type your blog, its great x

  9. :)Very good, although to be fair to Victoria Beckham, despite her wealth and health, I don't think her life is very happy. Too much jetting to and fro and worrying about tabloid stories about her husband. If the rich aren't particularly happy, it seems to make sense that wealth should be shared out a bit better, or am I a communist? (I went a bit communisty on a book site recently wondering why Brian Cox's picture was on his solar system book when his co-author's picture was not.)

  10. Good post. This will make me think about a few things close to home.

  11. Excellent post.

    Not just friends, though - partners too can fail utterly to understand.

    My wife walked when I was having problems getting a diagnosis (turned out - took 10 years - to be ME). 18 years later, she reappeared saying she'd been wrong to leave me. Like that was going to help!

    Bitter? Yeah, a tad but mostly not. More just utterly baffled.

  12. I think this made me cry cos it isn't the school gate mums...it is my family...

  13. The disappearing friends thing is so much my own experience. I didn't think of it so much in terms of chronic illness yet, and I don't know why I didn't... I had to skim read this from about half-way through, because it raises such difficult emotions. Depression is quite common among people who are chronically ill (for obvious reasons), although my depression predates it, and I try to be careful about it. I just wanted to say that I think this is a very general experience. I used to love my social life, and I don't even really have the opportunity to do those social things I could do now, because there's no-one to do them with. Everyone's busy with their other able-bodied friends doing things there's no way on earth I could join in with.

  14. I've had the same reaction too and somehow they expect YOU to feel sorry for them? Some people just arn't worth the bother and no matter what I know the truth and as long as my husband and kids are by my side thats all that matters!

  15. Wife and Mother - I had a friend come to visit me in hospital once. I was literally at deaths door. She'd never even visited before in about 6 years.

    She burst into tears and spent the whole time crying and asking me what SHE would do if I died!! I kid you not!!

  16. Yes, Wife and Mother, I agree. I end up feeling like I have to look after them!! To protect them from the real truth of how it is for me, because they can't handle it. I am on my own, no husband, no kids, no prospect of either, and it's very hard to keep myself going in the face of the loss of so many so-called friends over many years.

    Once again Sue, you have been the voice for so many, thank you. Now if only the right people would read this!!!

  17. Jude

    "Being a nurse caring for patients with chronic illness, I have come to realise that healthy people become afraid of chronic illness"

    I think that in large part you are right. Psychologists talk about attribution theory which is basically that the observer of someone slipping on a banana skin tends to attribute the slip to the other's inate clumsiness or stupidity. In doing so they are comforting themselves that they won't be similarly taken unaware by a banana. Long term illnesses are much more frightening than bananas and its far easier to think that the sufferer is just pulling a fast one.

    I think the other bit is that friends want to play with us and they naturally (but perhaps unknowingly) feel angry when we can't .... and its really difficult to be angry with someone when they're ill so the obvious way to resolve their cognitive dissonance is to walk away.

    PS. I wish the LibDems would resolve their cognitive dissonance by walking away from this government !

  18. carol/liverpoolloon/twitter22 April 2011 at 21:21

    i had a "friend" another mum, we had our children around the same time, we were neighbours, then schoolyard mums, then my newborn son had a brain haemorhage due to a traumatic delivery, she was very supportive, a few years went by we were very close saw each other every day, cups of tea and a natter but my sons behaviour became very poor , finally after many discussions i took son to a professional and he was diagnosed ADHD,Aspergers,Conduct Disorder,OCD etc.

    cut to coffee at friends house "how did it go today?" when i told her he had been officially diagnosed with all of the above. I went home and I NEVER HEARD FROM HER EVER AGAIN! whenever i contacted her she was too busy or just going out , the calls and visits stopped. I can look back now and think thank god i didnt waste any more time on this nobody because she wasnt a true friend