About a year ago I put a post up on Mumsnet asking what the worst thing people had heard said related to illness or disability. Unfortunately the thread is no longer there, so I can’t link you to it, but it was an eye opening and fairly horrible read.
I’d started it after having a conversation with someone about my long term clinical depression in which they came out with the clichés like “think positive” “we all feel down from time to time” and “you need to get out more”, now I knew they were trying to be helpful and they thought they were doing something good, but it was actually quite hurtful. It felt like my quite serious mental health issues were being dismissed as just a bit of a mood, and that I’d feel better if only I put some effort into it. It felt like they were saying it was my fault I feel the way I do.
I knew though that they had good – if misguided – intentions, so I began this thread in a lighthearted mood, not expecting too much from it. Then the posts started.
Reading through the thread I swung from fury to tears and back again.
The comments people had heard were horrific, some were malicious, some were like the one I mention above (meant well but falling short of the mark) and some were from health care professionals, but the main theme was that many people put very little thought into what the subjects of their comments actually went through.
I wouldn’t want to post others experiences without their consent, so I’ll share some of mine. Maybe others could share theirs too.
- While walking with my stick I heard a woman behind me talking to her child, “This silly lady is too slow isn’t she? We could walk faster if she wasn’t in the way couldn’t we? What a silly lady”
- When unable to move and having to say no to an activity I enjoy, “You can do more than you think, if you just tried..”
- On a bad day, “You could do this the other day, are you sure you have back pain”
- When seeing a doctor, “Your back pain is probably because you are depressed, if you stop feeling depressed then the pain will go”
- “Think positive and you’ll feel better”
- “We all feel down sometimes, but we just have to carry on”
- “You just need to get out more”
- While talking to a doctor, “Your depression is probably because you have back pain, if we fix your back your depression will go” (Depression since age 15 – Back pain since age 24)
- While talking to doctor about self harm “Eurgh, well that’s abnormal!”
- While telling doctor I’d swapped self harm for disordered eating (only ate a single slice of toast a day for 6 months), “Well you’re a healthy weight so we wont worry”
- Doctor when I was pregnant, “It wasn’t very clever to continue with this pregnancy was it? But they’ll probably take your child away anyway”
- Talking to a doctor, “Well you are a stressy person so you’ve probably made yourself sick”
- Doctor again, “I was sick every day when I was pregnant, I just carried on, just go home and stop worrying” (I later got admitted to hospital as an emergency as I was so dehdrated)
- To almost anyone, “Have you tried ginger biscuits/travel bands?”
- “You don’t take pills for it do you? That’s so dangerous, you don’t actually need them and they’ll harm the baby”
Any my experiences aren’t the worst either. I know one of my friends was told she couldn’t be depressed as she was “too eloquent”.
It’s amazing the things said to people when they are vulnerable and/or in pain, it shouldn’t be this way. But if even health care professionals think it’s ok, what hope do we have with the person on the street?
On a related note, here is a brilliant long term illness bingo card.