Chronic pain warriors: The Masters of Disguise
I’ve lost count of the numbers of times I’ve read that someone with a disability parked in a designated space, but then received a barrage of abuse from another because they ‘didn’t look disabled’.
One of the most frustrating parts of having an invisible illness is the perception from others that you’re ‘ok’.
I know I’ve talked about this before, but it recently reared it’s ugly head, so I vented in my support group. I was saddened to hear so many with similar experiences, so I felt it warranted another blog.
To summarise, I have bilateral femoral retroversion, it’s a hip condition that means extreme pain 24/7 and it makes it a million times worse to sit in a chair. I call it the ‘chair-itus’ disability.
I’ve suffered from this since around 2008, over the years I’ve learnt to cope and manage my pain the best way I know how, but I liken it to grief really, for the active life I once had. Dealing with any sort of loss is hard, it never goes away, but you learn to plod along in spite of it.
Of course at first there were a lot of tears and feeling angry, followed by frustration as it began to affect my day to day life, but it never ‘got better’. I’ve been wished that many times, ‘hope you feel better’, I’m never sure if it’s sincere.
I’m due to have my 4th orthopaedic operation in January 2019, this time to my right hip and it can’t come soon enough. Normally I’m keen to get it over with, but this year I opted to wait until the New Year. With Christmas around the corner, a busy period at work, an advanced accounting exam and a 6 month old puppy to plan around, there’s been a lot of organising to do.
Two days ago I had a call from the hospital, my heart sank as my surgeon’s secretary began, “you currently have an operation on 11th January.......”
Oh god, they’re cancelling it or moving it aren’t they, I thought. She continued, “and we’ve had a cancellation, would you be interested in having it in two days time”
WHAT?!? Obviously, everyone else aside, absolutely yes, but then I began to think about all those that relied on me, like the party of 9 that were coming for Christmas Dinner, I had to turn it down.
The majority of people that I have spoken to have been understanding, reassured me I’d made the right decision, but then there was that one person that’s rattled me enough to rant to you.
She said, “well at least that spot can go to someone who’s really in pain”. As you can tell, I’ve never really been one to be lost for words, but all that came out of my mouth was a gasp of air.
At the very start of this crappy journey I moaned like hell that I was in pain, but eventually you start to annoy yourself, never mind those closest to you, so you naturally learn to adapt and keep it hidden.
Now from the various conversations I’ve had on invaluable online support groups, I know I’m not alone when I wonder, am I a Master of Disguise?
I knew I looked ‘normal’ to those who didn’t know, but I had no idea I kept it so well hidden that someone would say something like that to me, ‘really in pain’, I can assure you, the decision I made was not made lightly!
As the old saying goes, never judge a book by its cover!
One of the most frustrating parts of having an invisible illness is the perception from others that you’re ‘ok’.
I know I’ve talked about this before, but it recently reared it’s ugly head, so I vented in my support group. I was saddened to hear so many with similar experiences, so I felt it warranted another blog.
To summarise, I have bilateral femoral retroversion, it’s a hip condition that means extreme pain 24/7 and it makes it a million times worse to sit in a chair. I call it the ‘chair-itus’ disability.
I’ve suffered from this since around 2008, over the years I’ve learnt to cope and manage my pain the best way I know how, but I liken it to grief really, for the active life I once had. Dealing with any sort of loss is hard, it never goes away, but you learn to plod along in spite of it.
Of course at first there were a lot of tears and feeling angry, followed by frustration as it began to affect my day to day life, but it never ‘got better’. I’ve been wished that many times, ‘hope you feel better’, I’m never sure if it’s sincere.
I’m due to have my 4th orthopaedic operation in January 2019, this time to my right hip and it can’t come soon enough. Normally I’m keen to get it over with, but this year I opted to wait until the New Year. With Christmas around the corner, a busy period at work, an advanced accounting exam and a 6 month old puppy to plan around, there’s been a lot of organising to do.
Two days ago I had a call from the hospital, my heart sank as my surgeon’s secretary began, “you currently have an operation on 11th January.......”
Oh god, they’re cancelling it or moving it aren’t they, I thought. She continued, “and we’ve had a cancellation, would you be interested in having it in two days time”
WHAT?!? Obviously, everyone else aside, absolutely yes, but then I began to think about all those that relied on me, like the party of 9 that were coming for Christmas Dinner, I had to turn it down.
The majority of people that I have spoken to have been understanding, reassured me I’d made the right decision, but then there was that one person that’s rattled me enough to rant to you.
She said, “well at least that spot can go to someone who’s really in pain”. As you can tell, I’ve never really been one to be lost for words, but all that came out of my mouth was a gasp of air.
At the very start of this crappy journey I moaned like hell that I was in pain, but eventually you start to annoy yourself, never mind those closest to you, so you naturally learn to adapt and keep it hidden.Now from the various conversations I’ve had on invaluable online support groups, I know I’m not alone when I wonder, am I a Master of Disguise?
I knew I looked ‘normal’ to those who didn’t know, but I had no idea I kept it so well hidden that someone would say something like that to me, ‘really in pain’, I can assure you, the decision I made was not made lightly!
As the old saying goes, never judge a book by its cover!
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