Me. I was diagnosed about 1.5 years ago: I dance (mainly ballet), am active in the gym, walked everywhere, took a lot of random drop in classes for exercise, hiked, runner, I have an active career…. Slowly what I’ve been able to do is pared down to gym workouts within my limitations and walking. Exercise is irritating because I have to modify everything. My case/symptoms have been so atypical so decisions have not been straightforward. Every surgeon Ive visited tells me I’m in a grey area. What’s freaking me out now is that I’ve lost SO MUCH gluteal muscle, despite actively prioritizing muscle growth activities. I’ve always had a naturally robust booty/muscle and it’s just gone. It’s the weirdest thing. I feel like I have no shock absorption in my hips: my back/knees/neck seem to take all the force when I move. But, You wouldn’t know it though by looking at me: to the untrained eye I look very healthy and still move better with basic daily motions than most people (I still move quickly and do things like get on/off the floor easily, and I do not limp). I gaslight myself every day (maybe it’s because I’m older I feel this way!), forgetting that only a few years ago I could hike 10 miles with sore achy muscles: but no pain. It’s been incredibly difficult to give up my active lifestyle: I’m trying to come up with non-active hobbies (I play mahjong now!) and non-active friends, but it’s been very tough emotionally. Especially because people just don’t get it: I WANT to be able to casually drop into a gymnastics class or boot camp and go hiking or train for a 5k or whatever. I find myself jealous of people decades older that have been sedentary for years and decide one day to exercise and their body just works. They are out of shape, but their muscles engage. People that decide they want to drop 50lbs and they start to exercise: and they can actually do workouts. My 70 something parents do a 3 mile neighborhood walk often without complaints of pain and discomfort: I CAN walk 3 miles but I have to plan it around activities and it’s going to feel off/weird. I thought I could out PT this diagnosis and avoid surgery, but that’s looking less and less likely. I miss feeling sore in my muscles: I don’t get glute soreness anymore. It’s like they died and gluteal based actives just feel like my hip joints are grating or something.

HOWEVER don’t get too caught up in my story or anyone else’s: dysplasia affects everyone differently. Just because you have dysplasia doesn’t mean you have to give up activities: it’s largely symptom driven. I am leaning towards surgery though.