We’re just over halfway through June, and it’s not been a great month health wise. My energy has been particularly low, which is ironic considering everyone else is getting out and about more and more, and I don’t feel like I’m getting very much done apart from the bare essentials.
It feels like time is going very quickly, and I haven’t really done anything all month. So, right now, I’m just trying to take things one day at a time and take care of myself as much as I can.
Following my recent article, Please Don’t Define Me as a “Hippie,” “Spoonie,” or “Zebra”, for Rooted in Rights, I’ve been thinking about the things that people have said to me over the years, and how these opinions and assumptions about people living with, often invisible, disabilities affect our perceptions of ourselves and our conditions.
So I’ve put together a short list of things, all of which have been said to me at one point or another, which maybe people should pause and think about before saying to someone else.
Trigger warning, there is some discussion of mental health issues, self harm and suicide.
“You should do Yoga.”
That Yoga is some kind of cure all for everything, or more precisely, the asanas that form part of yogic practice, is a pretty widespread belief. Along with kale smoothies and mindfulness, a lot of people think that a couple of “simple” lifestyle changes will change the shape of my displaced hip joint. It won’t. And I do “do Yoga”, because I find it beneficial, physically, spiritually and mentally, but it isn’t going to cure me.
“You shouldn’t do Yoga if you’re hypermobile, try Pilates.”
A lot of the items on this list are going to be polar opposites. I have a lot of “experts” in my life who know everything about my condition while of course, I know nothing at all. It’s true that some asanas can be difficult with hypermobility disorder, others are downright dangerous, but have I worked with specialist Yogis and have tailored my practice to me so it’s safe. I also do Pilates.
“You need to stop exercising and rest completely.”
For every person who has recommended an exercise programme to me, there is another who has told me to go to bed and stay there, forever. No thanks.
“I cleaned the house at the weekend. I am so OCD.”
This is a particular pet hate of mine. First of all, people are not OCD, they live with obsessive compulsive disorder. Secondly, OCD is a life changing diagnosis that does not revolve solely around hand washing and cleaning your house. Please, just, stop. Laughing about “being OCD” is literally like slapping someone in the face.
“You’re such an upbeat and positive person. If I were you, I’d k**l myself.”
Whoa! I no longer speak to the person who said this to me. I trusted this person and let them see me on my worst health days, and they said I shouldn’t bother continuing. This is so hurtful and shows a complete failure for some people to accept any diversity at all, and without diversity, the world would be a very dull place.
“I can’t be around sick people. They’re too miserable.”
But, I’m such an upbeat and positive person! Honestly, the disabled people in my life are the most positive and strongest people I know, and they do it in some of the hardest circumstances. If you don’t want to be around them because of their illnesses, be honest with yourself about where the problem lies.
“You just need to have a positive mental attitude, and you’d feel a lot better.”
People really struggle with identifying with invisible illnesses, because they can’t see anything is wrong, so they think you can magic away your symptoms by thinking them away with happy thoughts. As lovely as that would be, it’s just not going to happen.
“You’re not in that much pain.”
I was once lucky enough to meet someone who was clearly psychic, but they weren’t very good at it. They decided I didn’t need my painkillers at all and actually took them off me and flushed them down the toilet. Really? Like prescriptions don’t cost enough.
“People don’t discriminate against disabled people anymore. You literally see ramps everywhere.”
Firstly, not all disabled people use ramps. Secondly, some of the ramps you see are downright shoddy. Saying this is itself discrimination. And stereotyping.
“You’re too young to have that.”
Well, I was born with it, so I’m not.
I hope you found that interesting.
Luckily, most people in my life are very lovely and caring, and many of the people who said these things had no bad intentions, but sometimes, we all need to take a breath and pause before we speak and be a little more mindful about the words we’re using.
Take care,
Donna
Self-care snippet
This week I’ve had a few chats with some very good friends about everything which has been going on recently. Sometimes it’s really good to vent and get everything out, and afterwards the things that seemed like insurmountable problems, don’t feel so bad anymore.
Things I’ve seen, heard, read and talked about
Wheels for All on BBC Radio Merseyside (from 1:07:31) A lovely charity who hope to get anyone at all cycling. They are back up and running after lockdown and currently looking for volunteers to come and help with bike mechanics, public facing roles and heavy lifting – whatever your skill set they will try and match anyone to a role and you don’t need any experience as full training is provided.
The 80s song that brought my lost memory back after 10 years An emotional story about living with brain injury, music and memory, and creative writing.
Share something real on Portal: Conceiving Trigger warning: miscarriage. This advert came on while I was watching TV last week and reduced me to tears. It’s a controversial one. On the one hand, it’s great that they’re raising awareness of child loss (the title of the video is very misleading!), on the other, it feels a bit off that they’re using this to sell a video calling device. It’s great that you see two men discussing this issue (as often they are sadly pushed out of the conversation), but some of the dialogue again feels a little off. “Are you going to try again or…” Or what? For a short advert, there’s a lot to talk about with this one.
Blood donation: Gay couple 'thrilled' after rules change This is great news and so long overdue! As someone who has received blood in the past and is now precluded from giving it, I know how vital blood donation is and no one should be prevented from giving this wonderful gift if they are healthy enough to do so safely. Wonderful news for Pride month too.
Some great observations Donna. I have several invisible illnesses and suffer in private. I feel like a pain in the bum if i show people. I hate the sympathy. I believe they see and treat you differently once they know. Less respect! I don’t know if you agree with that?
But I think even doctors treat me differently, especially when I’m in a bed and they tower over me. The dynamic is wrong and unfortunately my attitude changes the moment another person reacts to me that way!