Tag Archives: empathy

Why?

My post last week about the fact that the majority of my family and friends ignored me when I was severely ill with M.E. made me think about why.  If I post on Facebook about falling down the stairs, dislocating a rib or cutting my finger open I get lots of “ow!” comments and lots of “hope it’s better soon” comments, but never a single word is spoken about the fact that I have been chronically ill for the past 21 years.  I find exactly the same attitude in the medical profession – I’ve had more care, understanding and compassion regarding my Ehlers-Danlos in the five years since diagnosis than I have in the previous two decades of living with ME, even though the ME nearly killed me and the EDS is currently just a frustrating inconvenience.

What is it about chronic illness that fosters such a lack of care and empathy?  When I think about this question I genuinely can’t come up with a good answer.

  • I think chronic illness scares people.  If it can happen to you then it could happen to them.  If they pretend it’s not happening then it won’t happen to them.
  • My cousin once apologised for ignoring me when I was bedridden.  Her excuse was that “I didn’t know what to say to you”.  We all know that acute illness or injury is a short lived thing which you’ll get over.  It’s easy to send “get well” cards if you’re actually going to get well……..it’s harder when you’re not.
  • Healthy people are busy.  This seems like a lame excuse, only now I’m partially improved my life is HECTIC.  It’s not so busy I would ever ignore my sick friends, but that’s because I’ve been where they are and have huge empathy and compassion for their situation.  I wouldn’t have had this if I’d never been sick and simply would have no understanding of how hard and lonely living with chronic illness is.  Sheer ignorance of life with chronic illness is behind much of healthy people’s behaviour.
  • People assume you don’t need them.  They presume that someone else is looking after you and if they’re honest they’re often glad someone else is looking after you because it means they don’t have to.  The trouble is, when all your friends and family assume that someone else is looking after you it can mean that no-one is looking after you.  And even when you do have caring people looking after you, you still need other company sometimes – much as I love my parents when you see someone every day you kinda run out of conversation.
  • Impotence.  The lack of ability to fix your situation is behind a lot of behaviour in the medical profession.  Health care staff are trained to treat people and when they can’t do that they’re stuck for ideas.  Brutal as it sounds, health care staff also work to budgets and would rather spend their time and money on people they can cure than people they can’t realistically do anything for.  Which is why I don’t see Doctors any more unless I know there is something concrete they can do to help me – I’m not wasting my time and energy and their time and resources.
  • And of course there are those people in our lives who simply lack any form of empathy and understanding.  Or who think we’re malingering.  Or who are just in denial that we’re sick at all.

None of this is an excuse for ignoring, or treating badly, people who are chronically ill.  But it is what it is.  Being angry and bitter about it only hurts you – it has no effect on the people you’re angry and bitter towards.  There are some members of my immediate family that I will never forgive for the way they have treated me since I’ve been sick but I don’t sit and stress over it.  I have nothing to do with them and that’s the end of that.  Other people I’m polite to but when they find themselves in any kind of difficulty I’m not going to be the one to help them, even if they ask (which a couple have had the cheek to do!).  On the other hand, the few people in my life who have shown me care and compassion have my 100% devotion.  I will do anything I can for them which, thankfully now I’m better than I was, takes all sorts of forms from doing my parents’ paperwork, to sorting out my friend’s computer, to shopping for an ill neighbour to taking my best mate out for lunch on her birthday.

You can’t change people so it’s pointless trying.  I educate people on my diseases if they ask and if they don’t ask they obviously don’t want to know.  Just so long as they don’t expect me to be interested in them when they get sick, which we all eventually do.

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10 things not to say to this sick person

There are lots of lists doing the rounds on the Internet about things healthy people should never say to a sick person, and while I can agree with many of the points there are some which, to my mind, are left off.  So I thought I’d do my own top 10 list of things people say to me which makes me want to poke them in the eye:

1. You poor thing.

Gee thanks!  Being reminded by you that my life is a pile of crap compared to yours is awesome, but just so’s you know it makes me hate you.

2. Well, you know what it’s like.

No, I really don’t.

I don’t know what it’s like to be exhausted after a 12 hour working day, have 7 hours sleep and wake up refreshed and ready for another 12 hour working day.

I don’t know what it’s like to have an aching back after I’ve spent 2 hours pressure washing my car.

I don’t know what it’s like to be tired after treking 4 miles up a fell.

I don’t know what it’s like to drive 7 hours to my holiday destination.

That’s because I can’t do any of these things, but you can.  I wish you’d be grateful instead of whinging.

3. I know how you feel, because I get migraines/backpain/tired/insomnia.

No, you really don’t know how I feel.

You get a migraine, pop a pain killer and have a kip while it takes effect.  I get a migraine and lie unmedicated for 3 days wishing I were dead.

You have a bad back, which doesn’t stop you working, or taking part in leisure activities, and doesn’t leave you unable to hoover your carpets or clean out your bath.  You pop a painkiller, or visit an osteopath, and get relief.  I have had daily back pain since the age of 11, which is so severe I use a mobility scooter and spend half my day lying down because it’s too painful to sit upright.  I am unable to take pain killers, and last time I visited an osteopath I ended up bedridden for 3 months after an anaphylactic reaction.

You do too much, get tired, have a sleep, and wake feeling raring to go.  I do too much, get tired, go to sleep, wake up feeling even more tired than I did the night before, then spend the next week in bed trying to claw my energy back.

You have the odd night where you toss and turn, then spend the next night having 2 extra hours lie-in to make up for it.  I haven’t slept a single night through, or had a lie-in, for 21 years.

And if you insist on trying to keep comparing your situation to mine I might have to kick you really hard in the shin.

4. What do you do all day?

I make effigies of insensitive individuals like you and stick pins in them.

5. I wish I looked that good when I was ill.

I am thin because I struggle to eat through daily nausea.

I have nice hair because I wear a wig due to alopecia.

And I’m only standing upright with the aid of braces under my clothes.

I’m glad all this makes me look like a regular human being.

6. It’s good to see you out.

I am out because I can’t afford to pay someone to walk my dog twice a day.

I am out because I need to go to the cashpoint to get money to pay my cleaner because I can’t clean my house myself.

I am out because I’ve just been to the doctors.

I am out because I’ve just taken my Mum to the doctors.

I am out because I need to collect my special yeast-free bread because I can’t eat the normal foods you take for granted.

I am out because I have no other choice, but I feel like shit and will pay for it later.

7. Be careful, you don’t want to do too much.

How have I ever managed to live with my diseases for 21 years without your advice?  No…….wait….. I managed fine.  That’s because I know more about my health than you do.  I’m not stupid and I’m not a child, stop treating me like one.

8. It’s only an hour in the car, you can manage that surely?

So, the day doesn’t involve me having to get dressed.  Walk the dog.  Make and eat breakfast and tidy the pots away.  Drive 7 miles to my parents to drop the dog off.  Meet you.  Travel an hour in the car. Lug my camera gear to our destination.  Spend 4 hours standing taking pictures.  Travel an hour back in the car.  Pick my dog up and drive 7 miles home.  Cook my tea, eat it and clear away the pots?  That sounds like a brilliant day, count me in!

9. Can’t you just push through and do a bit more?

OMG that’s where I’ve been going wrong all these years!  Thanks for the advice, I must be cured.  Or bedridden, anaphylactic and dislocated from pushing myself too much.

10. I don’t know how you cope with it all.

I wasn’t aware I had a choice, the only other option being to slit my wrists in the bath.  Each year I admit to asking my diseases to have the day off for Christmas and my birthday (and sometimes Easter if I’m feeling greedy) but they wifully ignore me – they should really be sent to the naughty step for a decade or two.

I know people say these things because they’re trying to care, or empathise, or relate, but actually they’re just being insensitive and if only they knew how much it doesn’t help, they might stop.