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.