Understand how Ehlers-Danlos Syndrome affects your team member

I have yet to find two people with EDS who have exactly the same problems at work or the same symptoms.  In my experience, having an open dialogue with your team member about their condition, what they struggle with (remembering here to discuss both emotional and mental well-being, as well as physical well-being), and any ways in which work can make things better or worse is a great place to start.

Make sure that you are open to really listening to what your team members says without any ulterior motive rather than thinking about your response, what it means for your team or how you can help solve things. Active Listening is a very important skill to practice here.

Allow them the space to feel comfortable with being entirely honest with you here, and always try to assume the best intentions - that they want to be working, they want to find a way to bring things into balance, and they are not trying to be difficult, shirk work, or cause problems!

When they have shared their experience and thoughts, demonstrate what you have heard by reflecting back to them the key points - without any judgements or trying to suggest anything - at this point you're just echoing that you've heard and understood their key challenges.  

Get creative about how you can support their well-being

One thing I can tell you for sure is that if you have a team member who is struggling with EDS and you don't try to find ways to support them, they will eventually crash and burn resulting in a possible extended period of sick leave and a long recovery.  

In my personal experience I am still recovering 10+ years later, largely because I didn't take things seriously enough early on.  Supporting their well-being is about more than the here and now, it is about their future life many years in the future.  

Finding ways to support physical and mental well-being early on can be the difference between someone being able to live a full and active life, and someone being physically incapacitated for many years.  

Ehlers-Danlos Syndrome is not something that is going to go away or get better.  

The only treatment that exists currently is based on managing symptoms and ensuring that conditions are the most conducive to the patient being able to maintain physical strength and stability. This doesn't mean that when the symptoms are well managed, the person is 'better'.  It just means that they are effectively managing their condition at that point in time.  Flare ups can and do happen - how you respond to them determines whether they last a day or two, or a month or two.

Based on what your team member has shared with you regarding how their condition impacts their life, you may need to get creative with how best to support their needs.

For me personally there have been a few significant steps I have taken along the way to being as well as I am now.

Physical support

I have had a range of physical interventions including physiotherapy, occupational health, rheumatology consultants, hand therapy, and rehabilitation classes.  Some were helpful, others less so!  Probably the most significant learning point for me has been finding ways to break the 'Boom and Bust' cycle as it relates to pain, energy, and emotion. 

I did this in a few ways:

  • Request support from Access to Work to get assessed for a proper desk and chair, keyboard and mouse which allows me to sit and work comfortably, without pain. They also gave me an immense about of support and ideas for ways that I could improve my working habits to 
  • Using a wheelchair whenever I needed to be on my feet for any length of time or was struggling with fatigue
  • Using braces and taping to support joints that were painful or particularly hypermobile
  • Taking time to rest after busy days or following events which involved travel
  • Using an app on my computer to force rest periods - read more about the other tools I use in my LinkedIn article here

Practical support

It might be that your team member struggles to sit for long periods, or needs to rest regularly. There are all kinds of ways to work around this, from getting support from Access to Work to help with identifying furniture, technology or training that could help through to varying their working schedule to allow for different postures and break up long periods at the computer or on their feet. 

Perhaps they might benefit from adjusting working patterns to permit a mid-week shorter day or day off to recharge?

For me personally, the most fundamental shift in my wellbeing coincided with adjusting my working pattern so that I do four long days, and have Wednesday as a non-working day. I still work full time hours, just distributed slightly differently.

While I still have to watch my energy levels during the longer days (generally I do something approximating to 8-6), having the day mid-week to rest and recharge means that I am immensely more productive and focused on the days I am working.  My team knew that Wednesdays were the day I wasn't working, so we simply made sure everybody had what they needed before I finished on a Tuesday evening.

It goes without saying that it might be necessary to involve the wider team to ensure that changing work patterns will be feasible, but it's well worth considering.  

A fully focused, engaged member of staff working four days a week is FAR more efficient than an exhausted member of staff doing the standard 5 day working week.

Emotional support

Receiving a diagnosis that is going to affect the rest of your life and have far-reaching implications, with no treatment available except symptom management, can be completely crushing. Often people will have been through years of misdiagnosis, being told they were making up their symptoms, even being called a liar, before they finally get an explanation for their symptoms.  Imagine for a moment the impact it would have if you lost the ability to do almost everything you enjoy.  That you were in pain most of the time, and had been told there was pretty much nothing that could be done about it.

From my own personal experience, I went from being a hockey player, a mountain leader, a fit and healthy 20-something with their whole life ahead of them to being barely able to walk up two flights of steps, having to stop playing hockey, being unable to volunteer as a Duke of Edinburgh's Expedition Assessor/Supervisor, and eventually being signed off on bed rest for almost a month.

Emotionally, it felt like I had stood in front of a mirror looking at my reflection and smashed it into pieces.  Everything that I was, everything that defined me, everything that meant something to me, no longer was.  I had to try to pick up all the pieces, and find a way to put them all back together.

Sometimes, work might be the only thing that is providing some kind of continuity in their lives, some kind of self-worth that they can actually do something.  To face losing that as well can be a terrifying prospect.

Any time your team member talks about their condition or how they might be struggling, bear this in mind.  Reassurance that you will try to work together to find a way that will help support them with managing their condition and opening the channel of communication where they feel able to share when they are struggling or ask for help if they need it, could well be a much needed lifeline.

Be aware that they are probably dealing with a lot of emotional turmoil, and this can easily bubble over in the workplace, particularly in roles which involve dealing with conflict or challenging situations.  This could be an opportunity to discuss with them whether they feel they need support in talking about what is happening if you have the option to help them access talking therapies through your workplace well-being programmes.

Consider early referral to professional services

There are several professional services which exist specifically to support people with long-term health conditions in the workplace.  

One in particular which has come to my attention recently is Working Toward Wellbeing.  

They have a service which is specifically aimed at supporting people with chronic illness in the workplace.  

If you don't have the resources within your organisation to support your team member, it is well worth seeking early intervention from experts.  

Not only will your team member benefit from direct access to their services, but they will also likely value your effort to support their well-being.

I hope that this has given you a few ideas for how to support a member of your team who is living with Ehlers-Danlos Syndrome.  If you have any other ideas or examples of ways that you have been helped in the workplace, do leave a comment below!