I got issues with my tissues…

For those of you who haven’t met my mother, you should. Welsh (though normally sans accent), dangerously intelligent, and usually hiding herself and her core of steel behind a pile of books, she will lull you into a false sense of security with her quiet, doting vicar’s wife act and big green eyes, then pull the carpet from under you with a pithy remark, or a flash of her sparkling wit. While I will happily engage in a full blown screaming match with my father, even I cower at the possibility of doing the same with Mum. She’s the real dragon.

Growing up, I thought my family were totally normal in their level of dysfunction. The fact that my mum didn’t run after us, and occasionally used a walking stick never really crossed my mind. She had more than enough ways to control 3 kids under the age of 5 (I never said she wasn’t mad…); she could silence us with a look, and get us back by her side with the very tone of her voice. In my teens, I (and my brothers) started to become fiercely protective of her on her electric buggy – a protectiveness which was probably unnecessary, as her driving (and inability to look when reversing) was and is generally the most dangerous thing for miles. I never really appreciated how difficult things were for her – she just got on with it. Mum was the first disabled woman to read Law at Cambridge, and yet the addition of a pair of crutches or a wheelchair do occasionally leave people speaking to her VE-RY SL-OW-LY. She’s polite enough to carry on as per normal, and let them realise in their own time that she’s FAR more intelligent than them. My Mum is pretty incredible.

Two weeks ago, I had an appointment with a Rheumatologist, a doctor who looks at systemic conditions, and this generally means they focus on joints, with conditions such as Arthritis coming under their remit.

If you’ve seen me recently, I’m wearing one (or occasionally 2) knee braces. As a kid, I was always getting ‘bad sprains’ of my wrists and ankles, and once had to take 6 weeks off work nursing after a fight with a particularly aggressive Pump Stand, which tried to dislocate my left wrist. At a Toga and Tequlia Party in the medical Fresher’s week, I dislocated my knee dancing, popped it back in, and necked a few more shots of Tequila before carrying on; it wasn’t just the hangover that hurt the next morning. On the last day of my Moroccan Holiday this year (ooo, dead posh), I woke up unable to move my head, crying in pain. Turns out a couple of my vertebrae probably decided to go for a wander (I had been demonstrating ‘Proud Mary’ to the Boy the day before…). Combined with the fact that ALL of my joints happily bend the wrong way (I have the best party tricks) and I can still do the splits aged 27, my Rheumatology lecturer suggested I should probably get a referral to see one of her buddies. Given I’ve been having chronic knee pain for over a year now (and in my insanity, ran a half marathon on them), I thought I’d give it a go.

The lovely doctor asked a series of odd questions; (“Can you do the splits? Do your thumbs bend that way? Do you scar easily? Do you have stretchy skin?’ – yes to all), and got me to perform my circus acts, and had a look at my naughty knees. ‘You have Hypermobility Type Ehlers Danlos Syndrome’, she said. “Try saying that when you’ve had a few”, I said. She sighed.

So now I have a referral for hydrotherapy and a leg brace assessment (yes, more sexy leg wear), an explanation for why I often feel like my shoulders and elbows are in the wrong place, and why I have a love affair with NSAIDs that threatens to come between me and my stomach lining. My own brand of EDS is probably quite mild; I’m not in a wheelchair, I’m trying to avoid crutches and sticks (my braces are more than attractive enough right now), and I just ran a bloody half marathon for goodness’ sake (though I’m told my running days are over. Obviously gutted).

Unfortunately, this all came through for me in the middle of a massive knee flare up, and I currently feel more disabled than ever. I can’t stand in theatre when I’m watching operations. Buses are my nemesis; I have become incredible at glaring at people sat in priority seats. I went to a gig the other night, struggled to get up all the stairs (no lift in the O2 Brixton Academy), and couldn’t see much because I couldn’t stand, surrounded by beautiful things dancing as if they hadn’t a care in the world. I find myself ‘speed-hobbling’ everywhere, because I don’t want to be late, because then people might feel sorry for me. I’m grouchy at social events, because I’m trying to work out when I can next take painkillers, and I’m exhausted from all the speed-hobbling. People see the brace, and introduce themselves with “What the hell did you do?!” – “Hi, I’m Hannah, nice to meet you. I’m a part-time Bear Wrestler. Sometimes things go wrong!”

I don’t want people to see my ‘gammy leg’; but I want them to know to help me. I don’t want them to know I’m in pain; but I want them to appreciate that I’m not just being a moody cow. And I’m a bit scared, if I’m honest. I’m lucky to have been diagnosed while (reasonably) young; I can get physio, and drugs, and support if I need it. But I know that people with this often do spend time in wheelchairs. I’ve always been the ‘healthy one’ of the family. My ticker keeps ticking and my legs keep working. Now that’s not the case, my identity is changing, and I don’t like it. You don’t really see many wobbly doctors, let alone surgeons.

When I’m a bit lost as to what to do with myself, I generally give myself a challenge. When  my brother died at Christmas, I ran a 10K and a half marathon in his memory for the BHF (and my knees are SO grateful). Now running is over, and people keep telling me to swim. I HATE water. Getting my face wet genuinely terrifies me. I tried the local pool the other week and ended up crying in the shallow end. Classy (wet) bird, me. So I’m going to make myself learn, and I’m going to complete a challenge. Maybe swimming Loch Ness (though probably in a pool…). Oh, and I’m going snowboarding over New Year, even if I need to drug myself up. Take that, wobbles.

My Mum doesn’t have EDS (she can’t even say it, so has taken to calling it ‘Los Angeles Syndrome’ – sounds far more fun). Her brain and her legs simply had a falling out, and don’t talk much. But I’m really grateful I have her, because she makes this wobbly business look easy.


  1. Beautifully written. Sorry to hear about your diagnosis, but I’m sure even if wobbling and hobbling from time to time, you’ll get to wherever you want to end up, and also sure that a lot of people would identify with how it feels for you at the moment. Anyway – thank you for sharing, and if you see me around I’ll buy you more tequila #partytrickknee


  2. Hannah you are a Barham….. the philosophy is bring it on surgery is still very possible with uncooperative legs let no one tell you otherwise


  3. Hi Hannah!

    Thank you for the lovely insight into your life and family. I don’t usually respond to blogs but really wanted to share and sympathise having been recently given the same diagnosis. I have always had bendy joints and lived with chronic pain but this had been overlooked by Drs and at times I thought I was going mad. I was depressed for a longtime and I even attributed the pain to this.

    I had a slipped epiphysis and several bouts of hip surgery in my very early teens and i am sure this is all to do with HMS. More recently pain and joint problems became worse and I was referred to a rheumatologist for suspected arthirits. The consultant told me what I already knew and that there was very little that could be done medically to help other than ‘joint protection’ and core strengthening exercise and of course meds. It was also confirmed that pregnancy and child birth had caused further problems due to hormones that have made loose stretchy muscles even more stretchy, and painful! Yay!

    It sounds as though your experience of drs and medical professionals has been rather positive and I’m happy to hear that. My experiences have been rather frustrating as I found those I dealt with (consultant, Gp, several physiotherapists and an OT) to be somewhat baffled by the condition and lacking understanding of what life can be for those who struggle with this ‘unusual’ condition and even more unusual symptoms. (It was such a relief to find out why I am SO clumsy and have terrible spatial awareness!)

    Speaking more positively …… I am slowly learning to live with and accept my condition. I didn’t find physio very helpful as it moved at such a slow pace and if I’m honest I always forgot to actually do the exercises at home. Instead I joined a Pilates class which is very good at helping me tune my brain to my body and limbs… Although I do quite often end up doing my own thing and rely on the instructor to correct my poses.

    A lot of my pain is in my hands and fingers so use splints when doing the massive weekly ironing pile. The OT sessions really helped me evaluate my lifestyle and find alternative ways of doing things to limit discomfort. Sadly getting rid of nice fashionable handbags was one of the first things to go as carrying anything on one shoulder, in the crook of my arm or gripped in my hand would set me up for a whole load of pain for the day. So I found myself a ‘nice’ back pack and keep girly clutches for only ver special occasions! Heels…. Well I’m still coming to terms with that ha ha. I cannot imagine running at all with my knees let alone a half marathon!!

    Well I am going to leave it at that as I feel I am now begging to rant and that wasn’t quite my intention but it has felt so good to say all of this as I actually don’t know anyone with condition and find it a little annoying when someone says ‘oh yeah I have that’ followed by a small hyperextention of the thumb. Grrrr!

    I am also trialing a gluten free diet due to it being such an inflammatory food. I’m nearly 2 weeks in and have really noticed the benefits. It was suggest that I also give up or massively limit all refined sugar too but that would be a bit TOO much at once.

    Good luck in finding the right treatment options and good pain management strategies. I don’t think about my condition getting worse and I am lucky to be have an an ‘interesting’ life that has led me to develop a great deal of resilience. I’m sure you too will over come, cope and live with what ever is round the corner.

    Thank you for sharing and giving me the opportunity to do the same.

    Much love, Jess (aka terrified soprano)

    Ps your mum and dad are lovely too!


  4. Dear Hannah,

    I hope you are well.

    I spotted that you have spoken about joint pain/ arthritis in the past. We are confidentially currently looking for joint pain sufferers who might be interested in being a case study to try a new product designed to help reduce inflammation and pain of a joint pain flare, such as from osteoarthritis or an old sports injury/accident. This would be via a pharmacist consultation to ensure your suitability. We wondered if you might be interested? If so, we wondered if you could share the best telephone number to reach you on so we can discuss this with you further.

    Kind regards,
    Anna Holmes


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