Things Not To Say To Someone With Hypermobility

Hypermobility suffers will probably be able to guess exactly where I’m going with this. It’s the same, every time I mention I have the condition. As soon as you utter the words “I suffer from hypermobility” you must brace yourself for the onslaught of stupid questions or misguided (and unsolicited advice).

Possibly the most common response I get is “so does that mean you can do the splits?”. No. Hypermobility in some people allows them to be more flexible in the traditional sense and that’s great, but for a lot of us all it does is cause joint pain, subluxation and dislocation. Sure my wrists and fingers do weird things and I can comfortably “W-sit” as an adult but chances are that if I’ve brought up my hypermobility it’s because I’m struggling with it and not because I want 20 questions about whether or not it gives me superpowers. Just don’t go there.

Another “favourite” is “at least you are going to the gym”. Wait, what? Thank you able-bodied white man [because this one is nearly always them] for that great insight. For people with normal, healthy joints, if they experience weakness/give in or around a joint, it’s possible that all they need to do is strengthen the muscle around the joint and it will fix the problem. Unfortunately hypermobility is not just going to disappear. Yes, strength can improve it or help to manage it but for me this is as good as it gets. I haven’t fallen for a while, *touch wood* and my shoulder that subluxes or “clunks” is sitting relatively in place most of the time but my legs have started overextending, my hip sometimes slips out of joint while I walk, I’m struggling to go heavier on bench press because although I have the strength in my arms, chest and shoulders the weight pushes my wrist back too much. Hypermobility may lead to a few interesting party tricks but it can also be debilitating. Have some respect and understand that someone with the condition knows their body better than you do.

“My [insert relation here] has that and they just ran the London Marathon.” Ummmm congratulations?! This is probably the one I struggle with the most. I don’t run, in part because of my joints, and in part because I have no desire to do so. I’ve always been told that with my knees being the way they are running is increased risk (I have had some very bad joint related falls while running in childhood and when I was struggling with an eating disorder) and if I can avoid it then that’s for the best. If I REALLY wanted to take up running, with a carefully managed programme and physio and taping etc I maybe could manage it but I would rather just protect my joints. So when you supply this snippet of information what are you trying to say? You don’t believe me? You think that regardless of what I know is best for me and my physical and mental health you or your relative knows better? You think I’m lazy? Or that I should be inspired by your relative? Thanks but no thanks. I’ll just be over here doing what works for ME.

It could be worse right? “At least you don’t have X”. I’m sorry, I didn’t realise ill health and disabilities were a competition. I understand looking on the bright side and the fact that approaching things with a positive outlook leads to improved health outcomes. Really, I do. But sometimes you just want to have a moan about something that you’re dealing with. Sometime I get frustrated with my joints, I want to do more than I can manage. And yes, I’m grateful that I don’t have more serious things going on but don’t take away from my real, lived experience with your glass half full platitudes.

Let me know in the comments if you’ve had any experiences like this with hypermobility or other health conditions.

V ❤

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5 thoughts on “Things Not To Say To Someone With Hypermobility

  1. Heather says:

    I had a physio who told me that they had hypermobility and that my issue was my weight and lack of activity was why I wasn’t as awesomely skinny and healthy as her. I walked out of the appointment. My doctor was fuming – at the physio, not me. Being told it’s my weight is the worst thing, because I’ve had hypermobility my entire life. People don’t seem to understand that it’s a genetic condition, that affects your actual DNA, not just an injury like a sprain i.e. something that had a cause and effect. I had this pain and issues when I was skinny, I tell them, and no one ever listens.

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    • sirvikalot says:

      I got asked at a physio appointment if my weight was stable before because I think changes in weight obviously increases or decreases pressure on the joint and can make hypermobility more symptomatic but it’s ridiculous that your physio would have the conversation in that way.
      Putting a programme in place to work with your body rather than against it for a positive outcome is the way forward. I have been lucky with physios recently. I found a good one with a knowledge of eating disorders who I worked well with. There are nice ones out there. I hope you find one.
      V ❤

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  2. hannahinternational says:

    I love how people still compare people with illnesses like they actually think it’s possible to make a comparison. LOL. It’s one of my biggest peeves. One person’s experience with hypermobility (or any other illness/condition/etc.) is not going to be the same as the next person. If everyone thought like this, most of these problematic comments would cease to exist.

    Hannah
    hannahinternational.co.uk

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  3. Rebecca Claire says:

    Wow I cannot believe how ignorant people can be! In all honestly I don’t know a lot about hypermobility but that doesn’t mean I’m going to say stupid shit like this when somebody says they have it, I’m more likely to be congratulate someone on their strength and ask what it’s like to live with it. I definitely learned something about it from this post though so thank you for writing it 🙂

    Rebecca, libfemblog.com xo

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  4. Charlotte says:

    I’d like to say it surprises me but it doesn’t. Especially the moment of at least you don’t have…. I get that all the time with my IBS and fibromyalgia. I also had someone comment that if I’m still working my fibro isn’t that bad. Well THANKYOU Sherlock, I’ll remind myself of that next time I struggling through my shift ….

    Thank you for this post 💕

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