Let’s talk… JHS.

The NHS describes Joint Hypermoblity as ‘usually the joints are loose and stretchy because the tissues that should make them stronger and support them are weak’. 

I tend to stay away from telling people I have this, but sometimes it just happens. Most of the time, I’m ashamed to admit that I have this, because I think I appear weak and extremely high maintenance. I feel like a walking disaster just waiting to happen.

Joint Hypermobility probably is part of more people than you think. You may even have Joint Hypermobility. Remember that cool trick you used to be able to do with your thumb, or the way your fingers bend funny sometimes? Joint Hypermobility can be fairly common. It just means you have funny collagen that makes your joints bendy. It won’t really impact your life and you probably don’t even know you have it.

However, it becomes more serious as you move into the region of JHS. Think of Joint Hypermobility, but it actually can impact your life? I was 9 when I first dislocated my kneecap. It was, honestly, one of the scariest experiences of my life. From that point on, I should have been diagnosed with JHS.

JHS means my collagen is different to yours, and it makes my joints bendy. However, it impacts my skin, my joints and the way I walk. I find myself walking into things and wondering why I did that, or tripping up on ‘air’. Really, it’s just my faulty body. It means that I could dislocate my knee simply by walking down the street. It means I could put out a joint by just doing something fairly ‘normal’. Dislocations can be an every day occurrence from those who have JHS, and they have been for me for some of my life.

My JHS used to make me ashamed, I used to really despise myself for this. I felt like it was my fault that I had to pull out events all the time, or I had to take time off. I used to find myself crying because I couldn’t understand why my body hated me so much. I went through numerous doctors who had no clue what was wrong with me, and when they did, they packed me off with painkillers. I used to hate myself for having this.

No one really understands JHS because it is a fairly difficult concept to wrap your head around. There just isn’t enough research on it. However, it impacts people far more than you realise. For me, it comes in waves of chronic pain and constant tiredness. I can never feel like I have slept enough. I become restless when I sit for too long, I move about when I’m standing up and I constantly have trouble writing without my fingers falling into funny angles.

The chronic pain arises from us having to keep our joints in place, every day. Our bodies are working hard to keep everything aligned and that means they hurt after a short amount of time and I constantly want to nap.

I had three surgeries to stop my kneecaps dislocating.

JHS is something that can be easily recognised if doctors start to take it seriously. My kneecaps are probably fair damaged from years of coming out of place. I am repeatedly sent away with painkillers. I constantly have to explain myself to people because there is no education in schools or universities, when it impacts young people the most. There should be things put into place to make dealing with JHS easier and less stigmatised.

No one with JHS should be called weird or shamed for their body. JHS is something that impacts some of us, but it isn’t recognised… but is should be. I’ve come to recognise that my body isn’t exactly ‘normal’ and never will be, but that doesn’t  mean I should be ashamed. I’m making it through every day, I keep going every day. I’m learning to love what I was given.

It isn’t something that we can stop or cure, but we’re trying hard every day.

xx

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