I was sparked to write this when a friend put up this piece – 8 Things Not To Say To Someone Who Has RA by Mariah Z. Leach: January 29, 2014 – on Facebook.
I was diagnosed with Rheumatoid Arthritis when I was 34 years old. I was dancing at the time, had become “demonstrator” for a friend who taught jazz dance for Arlene Phillips at Pineapple, London. I did class for 2 hours a day, 6 days a week. I loved it, was super fit and supple, could stand with one foot at the bottom of the door-jamb and the other at the top! Overnight I was struck down with terrible pain and joints swollen to twice their normal size … and the swelling revolved around the joints. It was terrifying! It took them six months to diagnose me. In that time they kept me on aspirin for the pain so I developed a pair of duodenal ulcers to add to the pain. And fear. This was all over thirty years ago now.
Rheumatoid arthritis is NOT like osteoarthritis! It is an autoimmune disease where your body, your own immune system, mistakenly attacks healthy joints. You eat yourself alive!
Over the past thirty years treatments have improved enormously BUT the disease is incurable! Your immune system has destroyed parts of your body that cannot grow again. Oh yes, I’ve had both knees replaced and my right shoulder, as well as having both feet rebuilt four times! And yes, these operations have helped. Where I could hardly walk from one chair to another I can now walk out into the garden and sit and weed … that, yes that, is an enormous improvement. I can drive the car again, so I can feel independent and not a continual burden. I can go out with friends. But the disease is still there, and always will be. It flares up several times a week, I am struck with fatigue, flu-like symptoms, every day there is pain, sometimes more sometimes less. The meds – without which I really would kill myself because of the pain – have given me diabetes and osteoporosis and Sjögren’s syndrome which can lead to lymphoma. The osteoporosis has resulted in three fractured vertebrae which give me continuous pain.
OK … so … ?
I completely agree with those 8 things. Do NOT say them to anyone you meet who has RA! But I’d go further. What the hell is it makes you want to say them in the first place? Are you trying to compete? Are you trying to “make it all better” because it hurts you? Are you confused and don’t know what to say? Do you want to help?
There are probably lots more reasons why people burst into this godsforsaken helpful mode when they hear someone say they have a disease. All of them are useless and wrong! There is one, just one, good thing you can do to help the person who is telling you about their disease … LISTEN. Shut your own mouth, turn off your fears and panic, and just listen. You don’t need to comment at all, just be there in full listening-mode, not getting in their face, not offering stupid advice (all of which they’ve likely heard many times before) and be there for them. Yes, for them! Bouncing in like some idiot with a load of “helpful” advice is not being there for them … it’s actually being there for YOU! You’re not thinking of them, you’re thinking, OMG! How can I help? This is overwhelming to me!” etc, etc.
If you do this dreadful bouncing-in then you’re effectively asking this chronically sick person to take care of you and your little fears, worries and pain! Is that what you intended?
So go and learn, teach yourself, how to listen. It’s something very, very few people are in the least bit competent at and certainly not something we teach our children! Although we should.
Now … to go on from there … one of my liminal (yes, I do mean that word!) responses when I’m attacked (yes, that is how it feels!) by some “helpful” idiot is to give them what my mother called an old-fashioned look and say, “You do realise, don’t you, that you are heading for a broken nose?”
This usually stops them in their tracks. Sometimes they get all defensive, “I was only trying to help” and all that crap. In which case they are likely to produce the response, “Then learn to help. Think about me and not yourself!”
Yes, I’m rough when you tread on me. I tend to bite.
For this is precisely what you do when you galumph in with your four left feet … you tread all over us, stamp on our faces!
My responses sometimes get a schoolmarm-ish reaction, “There’s no need to be like that!” and the person gets all “hurt”. Oh yes there is, every need. You need to be stopped from hurting more people as you just hurt me. And you didn’t even know you were effectively pulling the wings off flies, for that’s how it felt to me.
To finish … what the hell can we do to stop this stupid “politically correct” way of hurting people? How is it OK to trample some chronically ill person and then get all up-tight when they smack you back? You know, I even had some twat (yes, it was female!) tell me I shouldn’t call myself a cripple! WTF? She even put her blasted hand on my shoulder in a motherly, comforting sort of way! Yes, she is still alive … I didn’t kill her for two reasons, a) you can’t have cats in prison and b) you can’t get your books published while you’re in prison. Yes, prison does work!
So, please, if you value your life, do NOT make a load of idiot remarks and suggestions to us chronically ill people. If we’re telling you anything about our disease – which most of the time we don’t do – then have the grace, nous and gumption to sit on your hands, put duct tape over your mouth and wash your ears out! Just listen. You don’t need to say a word …