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LET’S TALK: Hypermobility & Anxiety

Annddd *deep breath*

This is a kind of difficult post for me to write, mainly because it involves my personal mental health, and also my physical health. Which is kind of a sticky topic to talk about on the internet.

But I also think it’s an important post to write – mental health is a topic that NEEDS to be talked about openly, and hypermobility is and can be debilitating but is also rarely mentioned. I also wanted to be open about how much these two illnesses interlink – because I know for me they do.

So, let’s start with anxiety.

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Photo credit: https://www.flickr.com/photos/marisaysfuckoff/

 

Funnily enough, my anxiety began with another physical illness, glandular fever. I caught glandular fever when I had just turned 17, the Easter holidays before I took my AS exams in 2010. If you’re not familiar glandular fever is an illness that basically makes you tired constantly. And boy was I tired. For 6 months all I seemed to do was sleep and study, because I was determined to take my exams.

Unfortunately, by the time I’d semi-recovered from glandular fever (I say semi because it literally took me years to fully recover from the tiring effects of the illness), I was pretty anxious. Why? Because in the 6 months I’d being ill, I had spent all my time either asleep in my bed, or at school (or in some cases asleep at school!)

I felt so cut off from the world, from my classmates and friends and going back out there seemed terrifying. To cope, I made some rules. (1) Never go out at night and (2) always have an escape route. Gradually, my anxiety got worse. I would have panic attacks if I couldn’t get home immediately. I started limiting my comfort zone more and more. I didn’t feel safe if I wasn’t in my bedroom. The dark terrified me. The panic attacks woke me up in the middle of the night.

By December of that year, my best friend had realised something was up and had convinced me to go to the Doctor’s. I went, was prescribed beta blockers to calm me down during panic attacks (which I NEVER used because one of the side effects listed was sudden and immediate death!!) and referred to Cognitive Behaviour Therapy (CBT).

CBT is a therapy where you don’t talk about what caused your anxiety, but instead fight to stop the anxiety. It basically involved pushing my comfort zone out of my bedroom, to my town, to going to the cinema, to visiting London etc. It worked (ish), but I have to say I probably wouldn’t do it again – it was very aggressive.

To cut the story short, I got my anxiety under control – YAY! Unfortunately that is not where my journey ends. Enter, stage right: hypermobility.

For those not in the know, hypermobility is a condition where joints move beyond the normal range of motion. I’ve known that I had hypermobilty for a good few years. I’ve had instances where my knee gave way when I jumped off a train, or was running, but to be honest, these were more annoyances rather than anything else.

This all changed in August 2014, when hypermobilty basically overtook my life. I don’t want to go into specifics because even nearly two years later it’s too traumatic to even think about, but hypermobility caused me to dislocate my knee.

Blergh, even writing that sentence makes me feel physically sick. I was on a field, and my knee was out of joint for 40 minutes and I was in agonizing pain (screaming, crying, fainting, nearly vomiting – the works) and a ambulance refused to come because I was an adult and conscious.

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Needless to say it was a pretty traumatic experience. Anyhow, eventually the knee went back in of its own accord, and I hobbled/was carried to a car and driven to hospital.

There I was given a leg brace to stay in for 2 weeks, but the real blow was the Doctors parting shot:

This can happen again – anytime, anyplace. There’s nothing much we can do about it.

Now I’m not blaming the Doctor for this (he had no clue I was anxious), but as a anxious person I was beside myself. Then and there I resigned myself to a life where I would never ever do anything fun/exciting again because there was no way I was going through my knee going again. My anxiety was in overdrive.

The leg brace that was meant to stay on for two weeks actually stayed on for a couple of months. I never bent my leg, because I was afraid of what would happen if I did. When I was finally persuaded to take it off, my leg was so straight it was almost pointing the other way. I nearly puked and put the brace straight back on. I slept in the brace. I washed my hair in the sink because I was too scared to bath or shower. My life had descended into pure misery.

I actually vividly remember my lowest point. I was on my bed. I desperately needed to wee, and my bathroom is a 1 minute walk down a corridor. But I was too terrified to move. I just clung to my bed, crying my eyes out and holding on – those words were ringing in my head “This can happened again – anytime, anyplace”. Eventually I plucked up the courage to walk to the bathroom, but that day was just the worst.

I started therapy again, therapy that actually went to the root of my anxiety instead of focusing on how to fix me as fast as possible and slowly, gradually I began to pull myself back from the brink.

In March 2015, I got in the bath, which sounds like a stupid achievement but was actually EVERYTHING.

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In April 2015, I could do normal things again – like walk down to town or go to the cinema, without having an all encompassing panic attack.

In August 2015, a year since it had happened I was on holiday – walking to the beach!

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In September 2015 I graduated from Uni – which is remarkable in itself considering my attendance for my final year was abysmal.

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I chipped away at the fear of falling bit by bit. And I’m not saying I’m fully recovered at all. My hypermobility means that I am in almost constant pain, and I can’t work as much as I want to because I need a day where I rest my knee. I now do yoga three times a week to try and build my muscles up.

I suppose the point of this post is threefold.

Firstly, if you have anxiety there is nothing to be ashamed of. Anxiety is horrible and scary and life changing and if anyone says otherwise they are ignorant.

Secondly, hypermobility sucks. Seriously I am SO jealous of everyone that runs without fear and isn’t in constant joint pain at the age of 22. It’s also hardly ever talked about. The first time I ever heard about hypermobility was when I was diagnosed. There needs to be more awareness about this condition, because it affects many young people.

Thirdly, mental and physical illness aren’t mutually exclusive. My anxiety is so tightly bound up with my hypermobility, just like it was years and years ago with glandular fever. That’s not to say I can’t get anxious about other things, but for the most part, my hypermobility and anxiety go hand in hand.

SO, all my fellow anxiety sufferers and hypermobility sufferers out there; I love you! I know how hard it is to drag yourself out of that anxious hole, and I know how brave you have to be to put one step in front of the other and continue onward. You can do it, and that’s coming from someone who NEVER EVER thought I would live a normal-ish life again.

 

22 thoughts on “LET’S TALK: Hypermobility & Anxiety

  1. Laura,
    Thank you for sharing! I am so glad our paths have crossed. I have had spme issues also and even wrote about it on Fb the other day!(on my personal acct). My anxiety/depression struggles are also health related, non-life threatening, but apparently it’s my trigger!! It’s so important for these subjects to be discussed more, to give others hope that they aren’t alone! Glad you are doing so much better. (I am doing it really good too, just fyi!)

  2. Sounds like you’ve had a bad time of it. I used to be an agoraphobe so I understand. Also in common is that ever since I had this case of really bad food poisoning, I can’t eat anything left out for too long – the anxiety is too much! And I get such anxiety about new foods a lot of the time. Ah anxiety… it’s crippling. Bit of a pun there considering this post! Congratulations on all your accomplishments though, and good luck in future for your knee πŸ™‚

  3. Thanks for your honesty Laura, it’s sad we feel embaressed to admit to illness that Is actually all in our head(!) but is treatable. What type of therapy did you have the second time? I’m on list fir cbt but don’t really see how it can help me deal eoth the distress trying to get help for an eating problem that has physical cause yet to be identified properly, due to sloooooow response of nhs!

    1. Thanks for stopping by Tricia! The therapy the second time wasn’t on the NHS – I googled counseling/therapy and found a lovely lady who focused on talking things through rather than pushing me out of my comfort zone! Oh no – I really feel for you, waiting for a long time when it’s something so urgent is horrible – hope it gets sorted out soon! πŸ™‚ xxx

  4. Thank you. My daughter’s 13 and has Marfans. Today, she has told me that she’s been having what she thinks are panic attacks, so reading this has been very relevant.

  5. Hi my daughter has hyper mobility and we have been told there is a physical reason it causes extreme anxiety… hyper mobility not only affects joints but all connective tissue in the body and can effect nerves – the vegas nerve in particular. It can cause difficulties with local anaesthetic not being effective too. After hours of research on the Internet we are a little more clued up and have more understanding of this debilitating condition, which helps. Not so easy achieving an official diagnosis though. Thank you for sharing your storey xx

  6. You are do brave ! Congratulations and Thank you for sharing. I have emailed you and just to add my daughter had a reason for the anxiety too.
    Fiona x

  7. well done Laura. Everyone of us EDSers has been anxious at some point, or still are and reading your story really helps. fiona h.

  8. Thank you so much for sharing your story, I’ve had a very similar experience and know how tough it can be to just get over it!
    Susie x

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