All about… the bends.

Don’t worry; you haven’t stumbled on a post of me analysing 90s Radiohead lyrics (although, I could quite happily oblige).

This post is all about how being Hypermobile is not the same as having Hypermobility Syndrome (HMS). People will often tell me that they’re hypermobile too and I find myself asking if they have the syndrome? This is because being told that you have hypermobile joints is not the same as being diagnosed with the syndrome. You can have hypermobility without all of the other complications that arise from HMS.

The main image to my first post was of my hypermobile fingers. They were the key to finally getting my diagnosis and I was happy to share the image on my Instagram page. Then the comment shown below was then made.

bends

I know some people will feel that I had every right to call this person out but there’s a very good reason for me not to… before my diagnosis, I knew my figures bent this way but I didn’t know it wasn’t normal. For all I know, the person who wrote the comment could have hypermobile fingers too but no other symptoms and they may not be aware that HMS exists. If that’s the case, why wouldn’t the photo of my bendy fingers be questionable to them?

And this is the problem with the lack of information and awareness out there. People simply don’t understand the difference between the two.

Simply put hyper means “over” and mobility means “movement” and to be hypermobile means our joints have more flexibility than would be considered normal. At school, in our naivety, we would have referred to it as double jointed and anyone that could make the batman face would have been labelled so (that’s my Batman face at the top of the page).

Being hypermobile does not necessarily mean that you will have anything wrong with you. Yoga experts, contortionists, ballet dancers and a whole other range of professions make their living from their flexible joints.

Hypermobility Syndrome, however, is a connective tissue disorder that is formally diagnosed by a doctor (usually a rheumatologist).

If being hypermobile doesn’t automatically mean you have the syndrome, it’s vital to note having the syndrome doesn’t just make you hypermobile. 

My own hypermobility doesn’t give me the range of movements the people in the professions above have and yet I have the syndrome.

This segment on This Morning caused outrage amongst the “bendy ” community (if you don’t wish to watch it, people felt that the doctor dismissed a mother’s concerns of her son’s hypermobility on national television).

My issue with the content is that we don’t know what Sarah, the mother, is actually referring to. Is her son just hypermobile and prone to aches or does he have a chronic condition that comes with his flexibility? The experts should have ascertained the facts rather than just dismiss the son’s complaints and that’s the part I find really frustrating!

There is no clarification on the difference between being hypermobile and having HMS. There is no thought about how to stop scaring other parents that were watching.  There is no attempt to take on board the fact that this woman spoke of pain. They’ve simply allowed it to be relegated to just flexible and given a reason for parents to ignore their child’s complaints of pain.

And this is from a doctor on TV!!!!

Organisations, such as the Hypermobility Syndrome Association, are working so hard to raise awareness of this illness but, sadly, programmes like This Morning have a huge reach and it is so annoying that a flippant, 30 second clip can be so damaging. Imagine being that woman having to explain to her son’s teachers that he actually can’t do P.E. when word gets back to school.

If you wish to understand the syndrome in greater detail, visit http://hypermobility.org/.

Yes, we’ve got the bends but labels are dangerous when not used properly.

The Electric Zebra

Oh! And here’s that awesome 90s indie band that I stole my title from!

2 thoughts on “All about… the bends.”

  1. It is so frustrating when doctors do not even know the difference! I was diagnosed with hms 1.3 is years ago after a lifetime of pain and fatigue, my youngest is showing signs of also having hms but the paed would not accept that it is a systemic issue and could be the cause of her gastro issues including reflux and unidentified gut pains. They sent her for physio for her elbows which bend the wrong way but she only got 3 or 4 on beighton scale and they wouldn’t entertain the Brighton one. I was dismissed as a child too and told growing pains. What chance does jo public have if medical professionals dont get it!

    Liked by 1 person

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