Now let’s get this straight…

(Post from:pudendalnerve.com.au/2012/0...

So, you think you can see pain hey? Or rather your understanding is, if you don’t see it then it’s not there? Please read on because people like you drive me a little batty…

Now I’m going to need to prepare the ignorant readers because they truly are in for a rude shock… so ignorants, grab yourself a chair or lean somewhere and make sure you have a glass of water on hand. For those in pain and who understand and know exactly what I’m about to say then prepare to feel the load lift and the great sense of relief. Enjoy the moment, feel the empathy coming your way and most importantly, get ready to hit that share button.

Ok so some of you have cheated and glanced further down and read my big announcement, my shock news… ignorants, I hope you were prepared and are still standing.

“Pain is invisible!!!”

I know, I know, it’s shocking and many won’t believe it, ever, but it’s true. (People who understand can tune out now but ignorants- you obviously need convincing so read on and don’t groan and ‘nts’ me!)

Seen me smiling? It hurts. Seen me having coffee with a friend? It hurts. Seen me walking up the street? It hurts. Seen me having a glass of wine? It hurts. Seen my online social activity? It hurts doing that. Heard I went away for the weekend? It hurts… more. Did I email you? It hurt. Were we having a conversation about the weather? It hurt. Did you read my latest post? It hurt putting it together. Did you see my latest art piece? It hurt making it. Did you assess me and express your surprise that I was in nice clothes (and your disapproval because you had to help me put my nice boots back on)? It hurt, (and you’re an idiot!). In fact it all hurts and most of the time.

On the rare occasion it doesn’t hurt it means I’m on the other side of a bad day (because on a bad day you rest, so then you have a good day… but on the good day, you get excited and more active so you end up back at a bad day, so the pain routine is like this: Good day bad day, a bad day then a good day, and on and on it goes, and actually its been that way for me for 5 years in fact!

Obviously many will relate to my anxt, it’s not just physical pain that is invisible. And all sarcasm aside, I’m calling out for awareness and less judgement with some understanding on top. I believe, like me, people in pain do what they can when they can and they do it the best they can. They don’t want to be in pain, it’s not convenient, and smiling or ‘normal’ activity is an enormous effort to cover a monster (well that’s what I’m doing).

So ignorants I hope you learned something from this post. If you haven’t, leave a comment and I’ll clarify further but be warned to turn your censorship on because I’m going to let verbally loose on you!

And just in case you didn’t get it… how about a demonstration:

[jackytap]

Perhaps I can join your club! I am also invisible especially as I am in a wheelchair. I have had a really bad day today as I had the cheek to go out yesterday,you know how the pain arrives,bang and its there. So today I am not talking to anyone as I am too miserable but tomorrow I might smile?

[Hidden]

(extremely sarcastic) How dare you go out jackytap!! If you're in a wheelchair you should know you're not entitled to any part of the world anymore (end sarcasm).

Smile all the time, the smile is for you, not for those that are oblivious to the realities of life. Most of all, take care of yourself.

Thank you for your response. I hope the post helped.

[missteal]

I know how this feels. My sister had the audacity to tell me she thought I just had a low pain threshold and that 50% was probably in my head! I was so fuming but sat there and just said "well I don't know about that". Wish I'd slapped her!!!

I stayed with my rather frail grandmother a month ago. Think she expected me to have more energy and not fall asleep in the chair in the afternoon like she does. She couldn't believe how many different medications I'm on and how many heating things I had (hot water bottle for tummy, electric heat pad for back, beany heaty bag things for random other places). We were sat there one night and she said

"Are you like this all the time?"

I smiled, embarrassed and said "yes unfortunately".

She couldn't believe there was nothing the doctors could do. It was weird somebody actually taking pity on me. I'm 28 and recently had to buy my first walking stick.....not something she'd had in mind for her nerdy grand daughter. Think she expected me to be working for NASA or something by now instead of behaving like her.

I had a friend the other day ring me to ask to come over for a cuppa, when she arrived she said "wow, you still ill, thought you'd be better by now!"

Some people obviously have no quality control mechanism between their mouth and their brain! The word "chronic" isn't understood by anyone unless they've suffered from something that is! 5 years of constant pelvic, hip and lower back pain and I still get the question "are you ok?"!!

No I'm not ok, mostly, but I smile just like the rest of you because if I vocalised my pain every time it happens then I'd have no friends!

Thanks for starting this post and encouraging me to have a rant, I feel better now

xxx

[Helayah]

For arthritis I take Move Free and it really works! I sleep well when I take it.

Also try Nopalea, the all natural cactus juice. It helps decrease and eliminate inflammation on any part of the body. Go to trivita.com It also really works!

[DavidS2]

Well said Soula, it's been like this for me for 35 years

[Hidden]

I just received notification of these replies. I'm so sad to read them. Missteal you're so young and David that's devastating.

[juliansmom]

I love your post ive been too sick to eat for seven months so I lost all my excess weight. Now when I'm having a good enough day to get out people I know tell me how good I look and men look at me again! But I'm dying inside and I was happy and healthy when I was fat and these stupid starring men should only know my vagina hurts when I look at it.

[Hidden in reply to juliansmom]

That's so sad to read. And if you dared state 'my vagina hurst when I look at it' they'll think you're mad! This is so frustrating.

I've taken this frustration to another creative level now. I commissioned another artist to make a marionette of me and I'm going to paint/draw/document her all to communicate the invisibility of pain, not to mention loss of independence. You can see that work here: pudendalnerve.com.au/2013/0...

I hope you felt a little better viewing that drawing. And I hope your pain goes forever before you read the end of this message...

xx