"Never attribute to malice that which can be adequately explained by incompetence."
I'm sure the list of "things not to say to the chronically ill" will be familiar to many readers as there are more than a few versions around on the internet.
However, whilst they make valid points I do have something of a bone to pick with these lists and the way they are bandied around. They appear to encourage an unfortunate tendency to assume everyone who commits one of these heinous crimes is right up there with those who talk at the theatre in terms of how quickly they're heading for the Special Hell.
Whilst the ten things are indeed annoying and it's likely that all my readers have encountered them more than once, I wanted to go through the ten and look at the possibility that not everyone is being horrible.
(One should never pass up the opportunity for a Firefly reference - Ron Glass as Shepherd Book, image found on Tumblr, source unknown)
10 Things Not To Say To A Chronically Ill Person - Lisa Cophen for Invisible Illness Awareness Week 2007
1. "You can't be in that much pain."
Well, this one does tend to undo my point a little. I've always thought that chronic pain by it's very nature is a difficult thing to understand unless experienced - how do you explain to another person that you are in some level of pain every moment you are awake? Oh, and in the case of Fibromyalgia it moves, occurs in different places and is generally about as "tricksy precious" as a sensation can come.
Christine Miserandino's excellent Spoon Theory (included in The Warrens tab) is a fantastic way of explaining fatigue and the drain chronic pain and illness has on the body, but I'm still searching for an effective metaphor for the pain itself. I find myself unable to pick fault with someone finding it difficult to understand: rudeness however shouldn't be encouraged. I personally would never walk up to another person and question something so personal about them, but that's just me. I've found myself very fortunate in having people around me who are incredibly understanding even through my ineffectual flailing for an explanation.
A thought came to me that to combat this sort of thing from friends and family (ie. the people whose opinions matter to you) is to encourage them to read some of the literature you yourself will likely have read about your condition, or point them in the right direction and ask them to read in their own time. My doctor gave me the Patient.co.uk leaflet about Fibromyalgia which I kept to show my parents and partner and I found this to be really helpful. This way the emphasis is not on you yourself to be able to articulate the problem.
2. "Stop being lazy and get a job."
Who the heck says this kind of thing to someone? I find it hard to imagine this coming from friends and family and so I feel completely entitled to not answer such a presumption. If you'll say this sort of thing, I feel no obligation to waste spoons on fruitless attempts to educate you, and I don't feel anyone else should either. Score one for "Special Hell".
3. "You just want attention."
I've detailed elsewhere in the blog my particularly hurtful run-in with this one so I won't repeat myself. This is something I feel will "always" be an obstacle. Not everyone will attempt to understand or take the time to check their facts before they make their entitled comments and judgments. I can't say it's easy or that I've always been entirely successful, but I strongly feel this sort of thing is best dealt with by rising above it and refusing to allow the speaker your time or thought. Why? Because if people want to believe something they will, and you can do nothing to change it. It's best therefore to try to let it go and concentrate on the opinions of those who do understand and know enough of the situation to not make such idiotic comments.
Although my case very much disproved the quote at the top of the post, I don't always think people who don't want to learn are being malicious. Some are ignorant (some willfully so) and others don't feel the topic is important enough to warrant the time to learn - is it worth worrying about them if that's the case? Personally I think not.
4. "Your illness is caused by stress."
A common misinterpretation - although not wholly incorrect. In my case with Fibromyalgia stress certainly plays a part in the frequency of flares and also in their duration and severity. On a highly personal note contracting Fibro was what finally led me to curb the more highly-strung and anxious parts of my character and I'm slowly learning to be a little more relaxed overall. Why? Because I have an incredibly good incentive to do so. I don't like my flares at all. Interstitial Cystitis is thought to be an auto-immune disease though, so the cause is most certainly not stress.
I genuinely think this one is ignorance and not nastiness, and I like to think it's offered by some as an attempt to be helpful (however horrendously misguided). You alone will know at the moment in question whether it's worth trying to explain why exactly that isn't the case. When you pause and think about how common talk of stress and other anxiety disorders has become in recent years and how much emphasis has been placed on the role it has in wider health, it's easy to understand why people may think they're correct in saying this. There's no harm in a bit of education though.
(Not recommended for Fibromyalgia, migraines or indeed anything else really.
Courtesy of Part Time Priest)
5. "No pain.... no gain!"
Oh please, this is not a gym session. There is very little "gain" to be had from constant chronic pain. I don't think there is anything which can be said in the face of such rabid idiocy. Score another one for the Special Hell and I'm going to take this opportunity to quote Malazan:
"There is the door, be sure to take all your pompous second-guessing delusions with you." - Shadowthrone
6. "It's all in your head."
Well done for factual correctness, though not in quite the sense you meant! Fibromyalgia is indeed based in the brain and nervous system (or so goes current thinking) so I suppose in a way it is indeed "all in my head". However, that does not in any way give you the right to assume and tell me of your assumption that I'm imagining it all. Again I think this is mostly ignorance but probably of the more willful variety.
Is it worth an argument? I'm probably going to be leaving myself open to criticism for excessive passivity here, but I just don't think it is. We have limited spoons and must choose their utilisation wisely. For me it's a very conscious health based choice - anger is as toxic as stress and anxiety, and so I choose to concentrate on the opinions of the people who matter to me. Any comments along that line are going to nudge you firmly outside of that group.
7. "If you just got out of the house...."
I would never suggest hearing this isn't irritating, but I really do think it is mostly well meant. However, it doesn't really allow for the fact we want to get outside, we just don't always have the energy. My own attitude is to push as hard as I can (hence a short walk around our lovely local university campus this afternoon just to get out in the sunshine despite being low on spoons) in terms of getting outside, being active and doing as much as I can within sensible limits, but I do appreciate I am allowed some freedom by my middle-of-the-road severity in comparison to those more severely affected.
However, we all have our own limits and I think it's healthy to push as much as possible from both a physical and psychological point of view. It's hard to feel defeated by your condition if you know you've worked to the limits you have as often as possible.
In the face of this (as I'd guess that it's likely to come from someone closer) I would suggest just explaining (as vaguely or as specifically as you feel comfortable with) why that isn't always possible and then closing the subject. I've become a master at deflection and quiet changes of subject in light of this. Whilst it can be helpful to explain, I don't always want to talk about my health and I'm sure that feeling will be pretty familiar for others too.
8. "You're so lucky you get to stay in bed all day...."
Ignorance is bliss they say. Being able to stay in bed by choice is lovely, regular confinement to bed without choice is not so lovely. I might be passive, but I'm also quite firm in pointing out when a comment is nonsensical. It' can be worth reminding people that this isn't a choice, and those who are ignorant should sometimes be shown politely that this is the case.
I've come to the somewhat controversial conclusion that I don't owe it to the social whole of a situation to take ignorance such as this lying down - I draw a line between comments like "You just want attention" where the speaker cannot really be converted, and comments like the above which are flippant and said without thought. We've all been guilty of speaking without thinking - but we only learn in the long run if it is pointed out to us.
9. "Just pray harder."
I'm not touching the ins and outs of this one. I'm not religious and I wouldn't like to pass comment on the role of faith in overall physical and psychological well being. If it works for an individual then that is fantastic and you don't fix what isn't broken.
However, I do have an issue with this comment as it implies the appointment of blame onto the ill person - it basically implies they're ill only because they are doing something wrong. I place this firmly in my category of "lost cause" and for the sake of this post I'll make it a rather appropriate addition to the Special Hell.
10. "But you look so good!"
And lastly we come to the pièce de résitance of my argument against the attitude of assumed malice. This could very well be said in the context of trying to offer some cheer or comfort, not in the sense of the more derogatory and disbelieving "But you don't look sick!" Whilst it's easy to leap to a defensive stance first and ask questions later, I do think it's worth bearing in mind that not everything you don't agree with is spoken as an intended barb. Yes, a lot of chronic conditions are invisible. Some aren't though, and this could well be a bit of a lifter with a bit of careful timing.
Understandably it might not be what you want to hear. It may save a lot of potentially misplaced ill feeling in the future to just stop and consider both speaker and context, before you respond with this:
Right, that's me done attempting to inject a little peace into an often fractious subject. Positivity won't always apply or be appropriate of course, but it might not be wise to immediately discard it either.
Wishing you all many spoons for the week ahead!