I've been thinking recently about the experiences of me and so many others with hip dysplasia, and how so often this can get lost in translation between patient and health care provider. I wondered to myself, 'If we could have you know anything about this, what would it be?' and this is what I came up with:
No. 1: This is serious
No. 1: This is serious
Hip Dysplasia can't kill you, but it is a serious condition. When you don't have your hips you can't walk. This won't happen straight away but a dysplastic hip will eventually deteriorate if the condition goes undiagnosed or neglected. And if you think not being able to walk is not serious then... perhaps you might not want to be calling yourself a health professional!
Sometimes the symptoms are really bizarre
When symptoms first begin in adulthood, they have been known to be really intermittent in some people. Particularly when the hip starts to deteriorate, there can be days or periods when it seems absolutely fine, and others when a person might be struggling to even walk far at all. I'm not sure I have a physiological explaination for this, apart from it's relation to activity levels on some days. If you've ever questioned whether the pain a young adult hip patient experiences is all in their head then, so have we at times!
There is an emotional side to this
Being diagnosed with a life changing condition, many of us go through all the same shock, grief, sadness, denial, anger, fear and guilt as someone diagnosed with, say, MS or cancer. As I said, DDH is not life-threatening but it is a big deal.
This is scary
There is an emotional side to this
Being diagnosed with a life changing condition, many of us go through all the same shock, grief, sadness, denial, anger, fear and guilt as someone diagnosed with, say, MS or cancer. As I said, DDH is not life-threatening but it is a big deal.
This is scary
If PAO surgery is on the cards, the prospect of having one's pelvis cut open and reconstructed is a little bit daunting for even the best of us. Some choose not to go through with PAOs or TPOs due to the risks involved. Others weigh up the options and decide to go for it. Compassion is a very much welcome response in these times.
We happen to know quite a lot
Hipsters can come to be quite clued up about our condition. We do our research and there are online groups for people with DDH. These aren't just a dumping ground for our negativity, they are often quite highly medicalised, with lots of practical advice and support for each other. The reason for this is that we so often struggle to gain the correct information from you guys, the physios, surgeons and other clinicians. I have sometimes found more sensible information on a facebook group than from health practitioners, which does worry me a little as someone going into this profession.
We can tell when you're faking it
Many of us have been in this game long enough to say this. I have mentioned this in a previous post The Expert Patient. Please don't take it personally if we ask difficult questions, or are 'picky' about what health professionals we see, we're just trying to be proactive. What really helps is when you're honest about what you know about DDH and it's related surgeries (in an appropriate way of course), as then we can work it out together.
Shopping around
Those with DDH are actively encouraged to seek opinions from more than one orthopaedic consultant, because very few of them are specialised or experienced enough in treating it. Far from being a 'yellow flag' in a negative sense this is actually a sign of pro-activity and is indicative of the lack of correct knowledge and experience so many clinicians have in regard to hip dysplasia.
Information is key
On
being presented with treatment options, we need time and information to
process what the best action is to take, both now and in preparation
for the future, and it really helps when you have correct and
constructive information and guidance to help with that process, or can direct to where it is. After
all, that is part of your job as a health professional.
We go through a lot
If it's not the rigmarole of being sent around the houses to receive an accurate diagnosis & treatment, it's often multiple surgeries, lengthy rehab, acheivements, set-backs and emotional highs and lows. Not everyone is a rehab machine who can remain absolutely motivated and positve the entire time - that doesn't mean there's something behaviourally or psychologically wrong, it just is what it is to be human!
We like being treated with respect
During my time being out and
about as a student physio, I have come across amputees once or twice,
and have noticed a certain level of regard for them, particularly so-called 'high-functioning' amputees. There have regrettably been times when the attitude towards I and others in my place has not seemed to have been quite as respectful. It would be nice if it was, and when that kind of respect is evident it is much appreciated.
