Living With the Chronic Pain of Joint Hypermobility Syndrome

This was really difficult for me to write. Though, I’m a blogger, so I talk about things like this. I just want to raise awareness and hopefully someone out there can relate to what I’m saying. 

So, it is 2 a.m. I’m writing this to stop me from going mad. Something to distract me.

Hardly anyone knows about this, and I don’t like to talk about it. I feel like I’m just making a fuss out of nothing. And I don’t want this to be what defines me as a person. Your body doesn’t define what you do in life.

I don’t talk to people about this. Maybe I mentioned it once or twice to people who know me. Sometimes I’ll tell someone so if I mess up they can understand a little.

I had to tell people about my joint problems in my first and second year of school. I still do to this day, but only for emergency’s sake. I don’t reveal what comes with HMS.

HMS: Hypermobility syndrome.

Hypermobility syndrome was described to me by a doctor as “having different collagen.” This means my ligaments are stretchy and loose. This can make every day life just a little bit difficult.

Some people – actually, quite a few people – will go on with their lives and have hypermobility, but it will never impact them. They’ll just have “cool” party tricks to show people. I guess you might call it being “double jointed.”

And it is pretty cool if it doesn’t mess with you at all, but there is a side to it you might not see.

Chronic pain, unfortunately, can be associated with HMS. It supposedly can come from your ligaments as they work overtime to keep your joints in place. Though, I’m not too sure if much research has been done into HMS. I think it is one of those things people don’t take too seriously.

I’ll give you a quick and less medical summary of some of the symptoms HMS can cause: stretch marks (from an early age), unusual bruising, chronic fatigue, chronic pain, dislocations (one of the main symptoms), subluxations… the list is endless.

I was always called weird when I was younger, and it was probably right. I think I was diagnosed with this possibly a year ago, and I never considered why things were different for me.

I walked weird, and I probably still do. I stood differently – I still do. And I had the weirdest feet possible… and I still do.

Luckily, I have people around me now who will accept that weirdness about me. I actually sort of accept who I am now. I was given this body because I’m strong enough to deal with it. Scars, bruises, marks…they mean you’re still fighting.

I guess chronic pain isn’t just about the pain. It is about living with a chronic problem. There are far more issues to what you hear or what you see.

Chronic pain is like a friend who just persists and persists. They turn up one day and you think they’re normal. It feels odd, but surely they’re good people. Gradually, they get worse and worse. They become a real “pain” (that is a good pun, right?).

I’ve learned to deal with the odd twangs and aches in my joints. I wake up in the morning and know if I’ll have a painful day. I don’t have pain 24/7 though. I have what are known as “flares.” Sometime they get worse because of different factors. Autumn is a real treat for me, along with winter.

Chronic pain isn’t romantic. I’m not the girl who needs saving.

We’re not all lost causes because of our chronic conditions.

It is something we deal with everyday, and we get used to it.

We’re spoonies, and we rock.

Hope this raised awareness and helped someone!

Till next time,

Rachel

A version of this post originally appeared on RachelTalks.

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