I was commenting on another blog earlier when it struck me that I had way more to say about this than would be appropriate for a short comment on someone else’s blog.
So, with apologies to accordingtoabi@wordpress.com (don’t ask me, I can’t seem to copy paste her page here, nor my comment! Newbie! Stupidie!) here’s an extended version.
Abi was talking about someone she’d known on and off for several years being very confrontational and accusatory about seeing her recently with her walking stick. He said it was bullshit, as if she was making up her need for it.
I said she should have called her post, “The Stick And The Prick”.
Her post was also about how pain experienced as short lived accident-type trauma by what I call “normals” is invariably subject to huge wodges of sympathy and support for the duration, whilst the sort of long term, endless, relentlessly chronic pain that we get seems to bore people after a while. Ditto the inevitable physical disabilities we increasingly get as a result.
I think it DOES bore people. I think it irritates them, embarrasses them. I also think they run out of things they think they OUGHT to say. It never seems to occur to them that it would be kind of nice to have these old “friends” simply ask us if there’s anything they can do to help, or if we need a hug, or some practical help with the day to day stuff we find very hard to do. Even the offer of an afternoon out would be lovely to have – albeit with my now regular caveat of “If I can, I’d love to!”
After 4 official years of severe fibro (dx in 2011 after more than 30 desperate years of asking the medics for help in unravelling my mystery illness), you’d think everyone around me would have got it by now. But they don’t. I still get, “What’s wrong with you THIS time??” (sigh) For them, pain is not a chronic condition – well, if you’re visibly twisted with rotten osteoarthritis, they might just about understand that THAT is a pain that doesn’t go away with time, but fibro pain rarely shows externally, and if they can’t see it, naturally it doesn’t exist.
A sort of reverse ostrich situation.
Some people suck.
And it doesn’t only apply to pain and disability, either.
When I was diagnosed with breast cancer 8 years ago, the sympathy and support were initially massively touching. My house looked like a florist’s for weeks. My phone never stopped ringing. I had more cards than Christmas.
It lasted as long as it took for my hair to grow back after chemo. My then “partner” (please note the inverted commas) was awesome in his love and support in the beginning – right up until chemo started, when he gladly passed responsibility for me over to the oncology department. He didn’t see what it had to do with him. He didn’t sit with me during chemo sessions. He didn’t even drive me there after the obligatory first one was out of the way. After the extra-huge doses of steroids had kicked my 8 1/2st weight up to 10 1/2st, he was even less connected to me. By 13 1/2 – 14st, we were living separate lives under the same roof.
Some people REALLY suck!
The thing that people don’t seem to get is that breast cancer is one of those cancers that is never fully, conclusively, eradicated. Unlike colon cancer, testicular cancer, and probably some other types, too (and I absolutely am NOT diminishing anyone else’s cancer at all by saying this, it’s a terrifying thing for anyone to go through, and it’s HUGE), breast cancer has a nasty habit of coming back as secondaries. Breast cancer’s favourite 2nd homes are the brain, the bones, the lungs, and the liver. And it’s secondaries that do the majority of the killing. Primaries rarely kill. Secondaries very, very often do. The bitch of secondaries is that by the time you’ve developed identifiable signs and symptoms, it’s usually too far gone for any further treatment to be successful, by which I mean you don’t get to hold on to your life for very long after your secondaries have been discovered.
But if I have the audacity to mention my fears in this regard, (with the notable exception of my gorgeous “replacement” partner – well, I wasn’t going to keep the first one, was I? I’m sick, not stupid! – and my GP) everyone just stares at me as if I’m mad, and/ a raging hypochondriac. I am accused of wallowing, of throwing a pity party, of being deficient in strength of character by this failure to move on. I am told that because I have now passed the magic three year mark, and the five year mark, that OF COURSE it won’t come back!
Tell that to the women I’ve met in support groups who died of secondaries ten years or more after their “all clear”.
“Oh! You can live for YEARS with secondaries!” they say. Yeah….like my friend Tina, who developed bone secondaries and was given a 10-15 year prognosis. She went into a hospice on the Friday night, simply to give her family a weekend care-break, and she died on the Monday morning. She’d only been diagnosed a couple of months earlier. She was supposed to have at least another decade to beat it.
I could give you at least another dozen similar examples, and those would only be the people I’ve known personally through different support groups, or “the treatment environment”, as they call oncology departments and their various off-shoots.
It’s not that I think it’s going to get me every day. I don’t. Some days I don’t think of it at all. And I don’t ever wake up thinking, “It might be today…..”, but the prospect – the threat, I suppose – is just THERE, in the background. It’s like the sky, or the weather. It’s just there. All the time. Whether I’m consciously recognising it or not.
effingfibro 