Living and working with Ehlers Danlos Syndrome/Hypermobility Syndrome

Living and working with a health condition which is variable and generally not visible to the outside world can be a real struggle, and Ehlers-Danlos Syndrome is no different to any other.

Becoming a bendie

I have probably been hypermobile since birth, but for various reasons it wasn't picked up until I was training to be a Physiotherapist at the age of 23, when my fellow students noticed that my joints moved rather more than was 'normal'.  

One of our lecturers had a look and confirmed that I was probably hypermobile.  I started doing a bit of research and, as is the case with many 'bendies', lots of things started slotting into place.

I constantly sprained my ankles as a child and was clumsy, had often severe 'growing pains' from a young age through to the present day which were never explained, and many other things which could be attributed to this condition.

Living with Ehlers-Danlos Syndrome and Hypermobility

I didn't actually experience any ill effects of the hypermobility until around 2009, when lots of conditions came together which put my mind and body under immense pressure, and eventually enough was enough - resulting in a month off sick and a very long period of learning the real meaning of pacing myself.  

From this point I started to have problems with some of my joints - instability, pain, and resulting fatigue.  

This started in my thumbs and gradually moved to my shoulders, then my neck and back and finally my pelvis hips and knees.

Managing my bendiness

Nowadays having been through the NHS system several times, I've learned some ways to manage the condition and look after myself rather than reactively dealing with the symptoms when they get too bad to ignore (which seems to be the way the NHS likes to function).  

I am currently the most well I have been in over a decade, but this has taken over five years of hard work, commitment and dedication. 

I've sought out and found trainers to help me with my physical strength, learned and practiced meditation to help with my mental and emotional health, and done a lot of work on how I respond to my body not doing what I expect of it. 

The turning point for me was an intensive course of physiotherapy offered by AHP Suffolk after I had a car accident which resulted in whiplash.

My physio would not allow me to be discharged until I was better than when I had the accident, and I went through nearly 20 weeks going from 1-2-1 sessions, to basic back care courses, advanced back rehabilitation class and finally graduated to the supervised "open gym". You can read more about this journey on the first few posts on my Instagram profile, @TrainingWithEDS.

Learning to love exercise

Ruth in her Vegan Runners top, crossing a race timing mat and smiling making a V symbol with both hands

When I started out, I was barely able to fast-walk the length of a tennis court. Gradually this built up to gentle bursts of jogging, and simple bodyweight exercises like assisted squats, sit-to-stand from a chair, and assisted lunges. Over the years, I've developed in confidence, fitness, strength and stamina like I never thought possible.

I've found a love for weightlifting, which I attribute to being the single most positive thing I have done in my training when it comes to providing joint stability. (I strongly advise finding a knowledgeable trainer rather than jumping into weightlifting without any guidance! I currently train with Byron Smith at PureGym Ipswich)

I also found a love for running - especially off-road - and am currently training regularly, 3-5 times a week, and running as part of Vegan Runners at Parkrun and other local events. 

While I'll probably always be a slow runner, every day I am able to run I take great delight in making progress in my own race.

For me, it's not about winning the race, it's about winning my race. Away from disability, and toward ability.

I find runbritainrankings.com super helpful to help me track my progress, as it calculates a handicap score based on the conditions on the day (and it includes Parkrun as well as formal races), which is often a more representative measure of progress than the course time.  Here's my current handicap progress - you can see how long it has taken to start to see any improvements!

A graph showing improvement in handicap over several years, with a long plateau and a sharp rise in 2019.

 

Taking care of you

Even with all the progress I've made, I have to always be aware of how easy it is to slide back down the slippery slope!

At work, and at my home office, I have a really helpful (Access to Work funded) motorised desk, and a special chair with a coccyx cutout and supportive back rest, allowing me to work effectively without damaging my body.  Being in the world of work with a condition like Ehlers-Danlos Syndrome brings its own challenges, and I have found that I have had to be very forthright in making sure that my needs are being met. 

I've had to learn to put my own needs ahead of all else - if I am not well, if I have a flare up, I cannot function in the world. Kindness to myself is NOT an indulgence, it's a necessary part of ensuring my wellbeing

I find when I'm at the desk using the computer regularly or things are particularly fraught in some area of my life, despite having great posture and all the pacing, my postural muscles easily become problematic.  I've learned how to self-massage the parts that need a bit more attention and found some great tools that help with this!

I have also recently started to see an awesome sports massage therapist (Kat Parnell) once a fortnight which has been hugely helpful in spotting developing problems and addressing tight muscles. When your muscles are effectively holding your body together, training them with exercise means they can often become over-worked, tight, and painful - which results in the rest of your body trying to compensate, and a whole vicious chain reaction kicks off.  This is also the case if you have a very manual life and/or job - looking after children or relatives, lifting heavy loads, and so forth.

Take care of yourself. Give yourself permission to seek the help that you need to support yourself in being well. Tweet this

Being well doesn't mean no problems or injuries!

Generally I have trouble with my fingers and thumbs, shoulders, ankles, and my pelvis.  I still get flare ups, even with ninja pacing skills and all the training I do!  Even though I'm careful, every now and then I pick up an injury - both traumatic and overuse - but I'm so much more aware of my body that I now read the signs and dial things back quickly, which means a much more speedy recovery!

13435390 10156951008970697 3051356582919687794 nDeciding to use a wheelchair literally gave me my life back and enabled me to start the very long process of breaking the boom and bust cycle. 

For the last year or so of using my chair, I was actually pretty well physically, but ONLY because of the energy I was saving and the pain/injuries I was reducing by using my chair, which was enabling me to start working on my strength and wellbeing. 

I would often get asked "but you don't look sick" or "why are you using a chair when you said you were in the gym training yesterday?".

While these comments were never intended to be nasty and mostly just curious and seeking to understand, it was hard to be constantly explaining how much it was enabling me to be well, and to do those things, simply by using my chair.

While I have not needed to use my chair for several months now, I would not hesitate to go back and start using it again if my health started to deteriorate or I was not able to manage to function in the world.  It's a constant balancing act, and I am always learning!

The biggest issue I find is accepting the fact that I can't do everything I want and need to do, and being OK with that - but also being able to communciate that to others rather than just put up with standing for hours on end at an event and being in pain for the rest of the day.  One way of explaining the challenges of living with a chronic condition which I love is the Spoons Theory by Christine Miserandino .. in the past I spent far too many days out of spoons!

Working with Ehlers-Danlos Syndrome and Hypermobility

At the height of my health crash, I was determined to set up my business to allow people to work from home or from anywhere, just as effectively as if they were in the office. 

My company switched to this way of working (now known as remote working!) using cloud-based technologies and freely available chat systems (we mostly used Skype and Google Hangouts) years before they became popular, which meant that if I was having a bad day I could work from home, as could any of my team.  

Access to Work have also been a great help, providing the equipment I needed to work without causing more problems.

Never, ever, be afraid to ask for what you need

If you're looking for work, be upfront and confident about what you need to work at your full capacity, and give them the absolute best they can get from you. 

I often approach the topic when I'm at the negotiation stage, explaining that I am pretty good at managing my own health and wellbeing, but it would be really helpful if certain things could be put in place at work to enable me to continue with this - for example getting a proper desk and chair, being able to have compressed hours so you can rest mid-week (or working less than full time hours if that suits you better), having the flexibility to work from home, and so forth. 

Some people ask if I'm fearful about losing the job offer when I am so upfront about my needs before contracts are signed?
Maybe.

But ask yourself this.

Would you want to work for a company that would rather ditch a promising candidate (because clearly they think you are, as you're negotiating an offer) who is up-front about what they need to work to their full capability, and clearly able to self-manage a long term condition if offered certain flexibility and provision? 

Personally, I wouldn't.

Consider it a bullet dodged and move on to find a company who are disability-friendly and supportive of your health and wellbeing.  It's a hard call to make, but it's important that you are supported completely with managing your health and wellbeing.

Looking out for yourself in the workplace environment

During meetings, I often need to get up and move around simply because meeting room chairs (rather than my own chair) are uncomfortable for me to sit in for any length of time. Initially I felt really awkward, and would just sit there in pain, fidgeting and shifting about, until finalllllllly the meeting ended.  The net result was, I barely took in what was being discussed and certainly wasn't fully engaged in the meeting.  I probably really annoyed everybody else in the meeting with my fidgeting as well!

Now, I take a more proactive approach and advocate for my own needs.  I know that sitting on meeting room chairs is painful if the meeting is anything longer than 30 minutes.

If I can, I bring my own chair to longer meetings. If I can't do that, I explain to everybody in the meeting before it starts that sometimes I need to get up and stand for a bit because sitting for long periods is painful.  I explain this at the start of the meeting and just invite everybody to continue if I stand up. No more fidgeting, painful hours on uncomfortable seats or lack of focus in meetings! Hurrah!

Even better, we had some 'shower room' meeting spaces at my previous office which were standing tables with high stools in cubicles (with a curtain separating them from the office, hence the name we coined for them!).  These were ideal for less formal meetings if I was struggling to sit down for long periods, as I could sit, perch or stand without disrupting the meeting!

Figuring out what's giving you difficulties

You have to learn to notice what is causing you a problem, and explore ways to do things differently that might help with the problem. 

Can't spend more than half an hour typing at a time?
Break up your day into 30 minute chunks, and plan to switch between typing tasks and other tasks that aren't so keyboard-heavy. 

Struggle to be on your feet all day at an event?
See if you can source a perching stool, so you can still be standing at eye-height, while taking the weight off your feet. 

Don't expect everybody else to fix these things for you - my experience has been that I've had to be willing to do a lot of the leg work and be creative with figuring out what might be useful. 

I've had to try different things to establish what I needed, and then figure out what help I would need to make it happen. Some things I've self-funded, others I've had external support for, and others have been provided by my employer.

There are lots of resources out there to help with this, including Access to Work, Occupational Health services, Occupational Therapy, and Health & Safety representatives. Make use of them!

Being pragmatic

While it's great to expect that every suggestion you make would be fully supported by your manager, in all likelihood, there are probably going to be times where it's not feasible.  

You have to be pragmatic, and willing to compromise where you can.

For example, having the opportunity to rest mid-week when I'm doing an intense, full-on job is really important for me. Sometimes I use that half-day to go and do some chores or meet with friends, but sometimes I literally have to rest the entire afternoon through to the next morning. Occasionally I wasn't able to have a half day because there were things happening in the afternoons throughout the week that necessitated my involvement.

Generally, my half day is a Wednesday, but occasionally this caused scheduling problems - for example meeting with lots of people and Wednesday afternoon would be the only time available. Usually I worked from home on my half day, but sometimes there were important events that I needed to be involved in, which necessitated me being physically at the office for the whole day.

Negotiation is the aim of the game here, but negotiation with an awareness of the consequences of changing your routine

If I had to shift my half-day to another day of the week, I had to ensure I cleared out my schedule for the entire week, because it had the potential to disrupt my energy levels to such an extent that I may be running out of steam at unexpected points during the week. 

If I wasn't able to have a half day during one week, I would have to ensure I had nothing scheduled over the weekend at all so that I could rest if I needed to. 

Usually, my manager would allow me to take the Monday off as a full day off or as a work from home day if I needed to, in addition to having my regular half-day working from home in the following week, because I was able to explain the cumulative impact that not being able to rest during the week has on my ability to recover. 

Thankfully this only happened once or twice, and both times my manager was very respectful of my health, and proactively told me to do what I needed to do in order to recover afterward.

Don't overlook your mental health

While I've mostly talked about physical health, it's really important that you don't overlook your needs in relation to your mental health. 

If you know that you have a tendency toward overworking and becoming overwhelmed in the workplace, make sure you are actively planning in self-care time.  Find a way to flag up to yourself in advance if you've stacked up a ton of stress-inducing meetings. 

A friend showed me how she colour-coded all of her calendar entries - green being things that were supportive and red being things that were stress-inducing - so that she could easily see at a glance if she was building up a stack of red things that were stressful or required high levels of energy, and do something to adjust the balance and factor in more green.

Simple hacks like this can help you to structure your routine and get an insight into potential problems.

I helped to set up a meditation group at my workplace, and regularly went out for walks during my lunch hour (which I always took, away from my desk!) because this allowed me to rest my brain and get out in nature, which is one of the tools in my mental health first aid box when I'm struggling.

It's also really important to develop a trusting relationship with your line manager and colleagues, where you feel able to talk about your physical and mental health.  Being able to talk about things early can often mean they don't go on to become huge big problems, but get nipped in the bud right away.

Knowing what is helpful for you and proactively planning this into your routine can make a huge amount of difference to your wellbeing.

Managing commuting and long working days with EDS 

More recently, I worked for nine months in Cambridge.  Living in Ipswich, that's a 1h 25m commute by train each way (or about similar by car, but I prefer train!), with a 10/20 minute drive to/from the station and ~15 minute walk to the office.  2 hours each way, on a good day, door to door.

I developed a very clear plan for how I was going to manage this, and prioritised my needs:

  1. Get enough sleep
  2. Eat properly - I used Huel* for breakfast and dinner, prepared the night before, and had a cooked vegan meal in the canteen for lunch - reduced complexity, removed temptation to eat junk or not eat at all, and ensured I had a perfectly balanced diet aligned with my nutritional goals during training
  3. Maintain my exercise routine (in the summer I did an hour in the gym before hopping on the train, in the winter I went in the evenings or ran outside when I got home)
  4. Be able to rest mid-week
  5. Use my commuting time to do things that I love - reading, learning, meditating, listening to music or audiobooks etc.
  6. Not commit to anything on weekday evenings
  7. Be cautious with weekend commitments
  8. Minimise any unnecessary physical stress or risk of injury - I have a blue badge, so I was able to park at the station which meant I did not have far to walk when I was half asleep in the mornings or tired in the evenings (when I'm most likely to injure myself)

I negotiated with my employers to:

  • Work compressed hours - 8am-5pm four days a week, and 8am-1pm one day a week (Wednesday) - so I could do full time hours but have some rest space mid-week
  • Work from home at least one day per week on the same day I did the half-day (Wednesday) - after my initial induction period
  • Have the option to work from home (in agreement with my line manager) on other days where I had no on-site meetings to attend
  • Be set up with all the necessary software for remote working
  • Have software to ensure I took regular breaks (WorkRave - free!)
  • Have regular chats with my line manager, where I was open about how I was coping or what I needed from her to support me

I found this super helpful - it allowed me to be clear with myself about what I needed to do in order to stay well, and I was able to be proactive with my employers who were extremely supportive (I highly recommend the Digital & New Product Development team at Cambridge Assessment English!  A top team of people and an amazing culture!)

Ultimately, there isn't likely to be a cure ahead for me, as Ehlers-Danlos Syndrome is a genetic condition, however through looking after my joints, losing some weight and pacing myself I'm hoping to be able to manage it as well as I can to continue living a 'normal' life as much as I can!

For more information on Hypermobility please visit the Hypermobility Syndrome Association website. Also the Ehlers-Danlos Association is a great resource. 

* Huel has a referral scheme which means we both get £10 off your first order over £40 if you click this link