Living with a chronic disease is like living in a cell

Living with a chronic disease is like living in a cell

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Those words came directly from a client who has recently started working with our allied health team here at the clinic.

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No-one has ever explained living with a chronic disease quite like this to me before.

And to be honest, at first I was quite taken aback by the harshness of her words. But she went on.

"Even if you paint the walls, hang some pictures, and invite people in, you are still in a cell. And often, you feel trapped by the confines of your body and how you feel".

Although I found her words confronting, I'm indebted to this client whom I feel has really helped me, when put simply, get it.

Although I've worked within a Rheumatology and chronic pain setting for close to 10 years now, this particular clients words really hit home and got me thinking.

  • I wonder how many more of my clients have felt this way at some point?
  • Is what I'm doing as an Exercise Physiologist helpful in any way?
  • How else can our team support those with chronic disease feel empowered and liberated?

Thankfully, in this ladies instance, she went on to explain that since working with our team, she had felt "padding" in her cell for the first time in a while. And again, although this took some time to sink in, I realised how much of a complement this was and was keen to share with the rest of the team.

So how have we tried to provide such padding?

We listen, (like actually listen without judgement)

I'm sure there are not many health professionals out there that don't think they listen to their patients. Learning to listen is a life-long study, and this conversation has only strengthened my conviction to keep improving in this area. Over a number of consults, we listened to this particular clients fears related to exercise, her worry about falling and hurting herself, her self doubt, her lack of motivation. We've let her tell us about her overwhelming fatigue that can keep her in bed for days, as well as the challenges that come with performing at work at a high level.

We try to offer support, in different ways for different people

This has taken us time, experience and lots of listening to get the hang of. And by no means are we perfect, but I think we have come a long way in recognising the value that a truly supportive environment and team can provide. Support can come in the form of good listening, a kind welcome, regular smiles and simply just encouragement to keep going. Understanding that moving more and eating well is HARD WORK when you have a chronic disease. More recently, some of our clinicians have taken up the challenge and made themselves more available outside of their consult room and gym. Some clients have found this particular offering very helpful. We are hoping that by making ourselves more available, we can answer questions and hear those concerns SOONER. We are all on stand-by to help encourage, celebrate the wins, as well as work through the challenges together.. and we think this is helping.

Being good natured, and not afraid to use humour!

This I have come to realise is essential! By no means does this mean any of our team dismiss the concerns our patients might raise, but over the years I have realised that being able to smile, laugh and share experiences is in itself, a crucial part of any holistic treatment plan. Remaining open minded is also key, as we try to work with our patents to find solutions to the problems and challenges they face. For this particular client, our team has learnt to laugh as she quips (at times sarcastically) at our encouragement or movement requests. We appreciate the banter and do what we can to keep the sessions enjoyable, even as we ask our clients to push themselves and do things which can seem frightening.

So it was nice to hear in this instance, we had made a difference to this lady's life. Her words were optimistic and comforting, and I was very grateful that somehow we had been able to improve her confidence and comfort.

"At every turn, I know one of the team is there"

Her words have inspired me to keep improving what I do. 

Her words have been a powerful reminder for all of us clinicians to consider the person, not just their condition.

Her words will help drive us at BJC to keep improving, in all aspects of our care.

Here's to helping more people break down their cell walls. 


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