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I recently sat with a dear friend on their sofa, both sipping herbal tea and catching up on life. Michelle is a new connection, but one of those people you meet and feel instantly at ease with, like you’ve met some place before. She is happy for me to share her story here, thank you Michelle! Living with long term conditions including Ehlers-Danlos syndrome (EDS), Michelle has managed for many years and consequently had to make big life changes to adapt. In the past she had to use a wheelchair, but gratefully now has more mobility. Experiencing health conditions is undoubtedly part of what brought us together.
Whilst I have never used a wheelchair, I do know what it is like to live with a long term condition, having managed my own symptoms for six years (and long before that, unknowingly). My symptoms sit under the umbrella of ME/CFS, often called chronic fatigue syndrome. I don't love the name 'chronic fatigue' as it fails to cover the range of symptoms that are more than just being tired or run down. I also support many clients around a change in health and how to navigate emotions and symptoms, whilst making everyday changes to find a better quality of life. Despite my awareness, I was really struck by my friend's experience.
I listened as she told me the effort she goes to on a bad day to get up and dressed and I was in awe. I heard as she explained how many symptoms she is managing with determination and patience. It really is admirable that this person, through a hand she’s been dealt, has found a rhythm to life that allows her to make the most of it...and she truly does! This got me thinking... If I am surprised by what goes on behind closed doors, then imagine how surprised others will be too.
My Mum also lives with ME/CFS and I can easily take for granted the gift of having someone who understands what it's like. I know the effort that we go to to take extra good care of ourselves because it is essential, to eat the right things, avoid toxins, avoid stress, invest in healing, and much more. All the extra things that have to be in place before we can show up in the world and appear 'normal'. Often, this is all going on out of sight. Perhaps you can relate or know someone who can?
A few days later I was sitting on a different sofa sipping tea with another dear friend who also shares the long term conditions journey (yes, I drink a lot of tea on sofas!). We have always found common ground in learning to love our bodies with their limitations. I realised how lucky I am to have people like this in my life. There is something very necessary about being seen, isn't there, whatever our struggle is!?
As humans we need connection, witnessing and vulnerability, in order to nourish the system and have a chance of healing. That healing may not be a 100% health, but more a way of being content in the world with the ups and downs. I have found that healing is so much more than an absence of illness. It's how we show up for ourselves and others, and find the pockets of joy and wisdom, even on the bad days...maybe most of all on the bad days. We cannot heal in isolation and it is not our fault that we are ‘sick’. This collective growth in chronic illness is a wider issue that in time will become more visible (a chat for another time).
Sitting on these sofas with incredible souls, and being present with clients, I see the way we seek help through relating. We intuitively know that another’s care will be a soothing balm to our wounds. I do not mean that the answer to our problems is external, as we must do the inner work and take a level of responsibility. Only that this connection with others can wake up the heart with it's natural healing properties within and dissolve the illusion that we are seperate.
Genuine connection is medicine, don't you think? I want more people to have this support and connection, and know that they are seen. I particularly want more people living with long term conditions to have these sofa chats and see themselves as the resourceful beings we are. Too many people are alone, not getting the support they need and blaming themselves. We know the medical system has let a lot of people down and I welcome more supportive spaces.
Me and a dear friend Cathy Eden (colleague and owner of the second sofa) will be taking our sofa chats to the podcast studio, because we both want to connect with others who may not have a sofa buddy. We will be recording conversations on different themes around long term conditions, and can’t wait to share our thoughts, stories and tips. I don’t know where I would be without these people in my life. I hope you have them to, and if you don’t please don’t despair. I see you and there is time to find your own sofa space, no matter what your situation is.
Living with a long term condition (or conditions) and chronic symptoms, whether diagnosed or undiagnosed, is a certain kind of difficult that is often not articulated. I am learning to be a better advocate for this community, and will continue to find my voice to create spaces for honest sofa chats.
If you are someone experiencing a long term condition or chronic symptoms, you are welcome to reach out for a call about how I can support you. If you know someone else in this situation, then I hope that this has been useful for you and please do share the blog with them.
Any thoughts on this post, or perhaps you'd like to learn more about how I can support you?
I'd love to hear from you : info@soulspaceunlimited.com
I also know a wonderful coach who specialises in this area, Cathy Eden, who I can highly recommend: Cathy Eden- cathyedencoaching@gmail.com
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