What it's like to have adult hip dysplasia and a few resources
Scroll down for hip dysplasia resources.
I’ve written about my other hidden disability (dyslexia / dyspraxia) a fair amount but I don’t often write about being a hippy! I was born with bilateral hip dysplasia, although it wasn’t diagnosed until I was 1, which meant I was in splints aged 1 – 2, and used to slide around on my bum apparently instead of crawling. I broke my pelvis in a road traffic accident when I was 17, which might have exacerbated the problem, but I also had developmental hip dysplasia. Like a lot of hippies, I went round the houses for a diagnosis but eventually found a doctor who understood, who was retiring, who sent me to another nice doctor who was pioneering a new treatment called a Periacetabular Osteotomy (or a PAO).
I had a right PAO in 1999, although plans to do the left side were abandoned as it didn’t look so bad after the first op. I was one of the first people to have a PAO in the UK. I had the screws taken out in 2002, although one broke so I still have half a screw in my right hip. (Insert joke of your choice here!) Thought I was going to have to have a hip replacement recently but it’s not bad enough yet!
I get really bad pain in both hips. Occasionally I get so stiff I can hardly walk, other times it feels like I’m walking through cardboard boxes. My legs can get tiggly when I have to stand for too long, other times the pain is in my lower back (probably because of how I’m standing). It gets worse if I have to stand or walk for a long time, or if there’s a change in the weather. Some days I can’t imagine what it’s like to be pain free and that gets me really down. Sometimes I use crutches, occasionally I need a wheelchair – especially if the walk I want to do (around Sheffield Park for instance) would be too painful without one, but usually it’s a hidden disability. I recently cut out lactose and started including turmeric in my diet, and I’ve also gone back to yoga. Different things help different people. So that’s where I am.
I went to Italy recently and did a 45 minute walk to the top of Vesuvius. I was in a lot of pain for most of the way but I was determined to do it – I could see my 7 yr old son and wife up ahead plus several souvenir / drink stands, and that spurred me on – and I’m so glad I made it to the top. I think that Vesuvius climb sums up what it’s like being a hippy – people don’t understand how it can be really bad but that sometimes I can achieve things like that. There are a couple of answers. My condition can be awful one day and better the next, and I can keep going even though I’m in a lot of pain – which I pay for later. Just because I’m doing something like walking up Vesuvius (or standing up teaching a workshop, or walking to the shops) doesn’t mean I’m finding it easy – the absolute opposite much of the time. That’s often true with hidden disability – you can’t see the effort someone’s putting in beneath the surface.
I thought I’d share some of the hip dysplasia resources I know about below. Let me know in the comments if you have any more.
I’ve collated some resources on an Amazon book list here: Hip Dysplasia books
Also check out http://livingwithhipdysplasia.com or https://twitter.com/dysplasiahip on Twitter and ‘Sex? With these hips?‘
Try these Twitter follows too: @DDHUK_ @MjSharp85 @STEPS_Charity @IHDIonline @onehipworld @hiphiphoorayddh @HipPainCardiff @function2fitnes @ScrewDysplasia Also check out Hippies Up Snowdon 2018: @snowdonhippies
Here’s an interview with Natalie Trice, the author of Cast Life: https://www.talentedladiesclub.com/articles/interview-with-freelancer-writer-natalie-trice/
There are various FB groups for people going through PAOs and there’s also the adult hip dysplasia group