I was sat in the clinic office of one in a long line of health professionals I worked my way through in order to get to where I am now. I'm not sure what I looked like but I imagine my eyes were probably glazed over and my face like some sort of mannequin.
"Your hips are never going to be normal," stated the well-intentioned individual sittng across from me; "Your muscles are weak and you need to do more strengthening exercises."
My mind ruminated on the last year I had spent faithfully attending weekly Pilates classes, the home exercises I kept trying to maintain, and the countless physio I had been doing for the past few years. As the explaination that this was a lifelong condition and strengthening exercises were needed every single day fell on my ears, I felt a dragging feeling. The same feeling I'd had during a one off surfing lesson abroad some years ago, when I was struggling to paddle out to sea on my surfboard (I never did get the hang of surfing but I'm sure it was amusing to those watching). Doing physio exercises every single day for the rest of my life. FYI: that wasn't what I was told when I was diagnosed at 26.
I was still getting recurring symptoms, you see, in at least one of my hips at that point. So to be told the only way to stop this was to do more and more physiotherapy despite my best efforts already was beginning to feel a little depressing. And anyway, why wasn't I told this when I was little? If all this endless physio was necessary, I could have started back then and given myself more of a chance. Dysplasia or not, stronger muscles mean a better functioning hip, relatively speaking.
If I was a toddler I would have kicked a chair over in petulance and said "that's not fair!" But I didn't. I remained polite and good natured, like a nice, pleasant patient, sat there in the clinic office.
Anyone with a developmental or lifelong condition knows the deal: regular physio to keep things under control, to keep themselves alive longer in some cases. It's darn boring and a right faff, but totally necessary. The thing is, though, people who are diagnosed in their early years come to have an understanding of what it means for them by adulthood. Self-management and physio exercises may build up gradually and become part of daily routine for life. Sure, it is disheartening at times, but they know what the expectation is. Patients lacking motivation can be sure to be given a bit of a 'prompt,' so to speak, by those involved in their care.
I suppose this is part of a bigger discourse about information for patients: some of the fundamental aspects of DDH and its long term prognosis have not been explained to me until much later in life. Sometimes I am angry at the way I dropped off the radar at 9 months old with no follow up and no clear explanations to my parents. 'Hip Dysplasia' is a term I heard for the first time at 26 years old. I was asymptomatic for most of my life, apart from the knee pain I experienced in adolescence (see The Story So Far page). I had no idea I had this condition or what lay ahead for me, and even when I did find out, it still took a great deal of time to gain a clear diagnosis and prognosis. So having all the onus of responsibility placed onto me at times feels a little unfair. And I'm sure those with stories similar to mine would agree!
It can be easy to feel overwhelmed by all this rehab and the muscle imbalances which are so hard to work at correcting now. No doubt some things may never function like those of a normal hip. I am extremely grateful for the care and information given to me more recently though, and I want to stay positive, not angry. Now, when I see patients on placement, I think twice before getting frustrated at them for not self-managing!
I suppose this is part of a bigger discourse about information for patients: some of the fundamental aspects of DDH and its long term prognosis have not been explained to me until much later in life. Sometimes I am angry at the way I dropped off the radar at 9 months old with no follow up and no clear explanations to my parents. 'Hip Dysplasia' is a term I heard for the first time at 26 years old. I was asymptomatic for most of my life, apart from the knee pain I experienced in adolescence (see The Story So Far page). I had no idea I had this condition or what lay ahead for me, and even when I did find out, it still took a great deal of time to gain a clear diagnosis and prognosis. So having all the onus of responsibility placed onto me at times feels a little unfair. And I'm sure those with stories similar to mine would agree!
It can be easy to feel overwhelmed by all this rehab and the muscle imbalances which are so hard to work at correcting now. No doubt some things may never function like those of a normal hip. I am extremely grateful for the care and information given to me more recently though, and I want to stay positive, not angry. Now, when I see patients on placement, I think twice before getting frustrated at them for not self-managing!
