Sympathy Not Solution
"I'm so sorry"
This is what a Harvard medical doctor (rheumatologist) said to me in October 2024 at a conference when I told them I have Hypermobile Ehlers-Danlos Syndrome.
Why did they as a doctor say this? Because hEDS is a painful, genetic, tissue issue with no cure. And as a rheumatologist this condition often resides within their specilisam so they know what this is.
And they know what can and can't be done.
Why did I feel a weight lift from me when I heard those words?
In a world where we are all eager to solve every problem and are solution oriented (yes I’ve seen all those linkedin bios and proud posts - should that be boasts?! ) I have felt like a problem.
And feeling like a problem is so alienating.
And makes me feel like I am a bother.
And it makes me feel very lonely.
Have you tried?
I know that people mean well but unless you are a fellow zebra, zebra knowledgeable medical professional or my retinal specialist please avoid advising me with your latest treatment you saw somewhere with no context.
"Have you tried yoga?"
"Have you tried distracting yourself?
"Just stop thinking about the pain!"
I have actually tried all of these and SO MANY treatments and therapies.
And I want them to work, I need them to work but even with my entire being and fibre of my body willing them to all work, many don't work well for me.
Yoga - I am already too flexible - what I need is strength so Pilates is what I partake in.
Distractions - ohhhh bad idea - I just ended up in more of a pain pickle than before. No, doesn't work for me.
Don't stop thinking about the pain - now listen, sometimes the pain hits, triggered by a food, temperature, emotional experience.
Pain is telling me something which is usually to stop and rest and be gentle with myself. I am listening to my pain now and that makes a huge difference to my own boundary setting and how I treat myself.
Do I need to be fixed?
For those that have chronic conditions, being told over and over about a miracle patch, pill, operation to solve things merely tells me that you want me to be fixed when I don’t consider myself broken.
Delicate yes, breakable yes, but never totally broken. And yes, my heart and my foot may have broken a few times but well you can't make a yummy omelette without breaking some eggs now can you?!
So when I get the old "Have you tried..." messages I really feel like you don't accept me like this, with warts and all.
I feel like you are scared of me.
I feel you are quite un-empathatic and a huge red flat tbh! I said what I said.
So what to do?
Show me Sympathy
These are my fave top tips for showering me and my fellow Zebras with sympathy. Because sometimes something has no solution so what can we do?
Maybe pour our “solution” energy into:
Being Sympathetic
It has been 40+ years and I am at a point where the doctors keep telling me that I am likely to know better than them about my own body.
So please, I'm tired and in pain.
I just need a hug!
Accepting of change
The only constant in life is change and the accepting of that concept and that pain is real has been transformative for me. Yes I feel the pain but now, realise what it is saying to me. Being open to acceptance of my situation has helped me navigate my pain.
Providing Support
Please show up and support me.
I have greatly reduced my activities so I don't get out as much which I really love actually.
But I am still here and sometimes a support is simply sending me a meme or two!
Being Ok with the not ok
OK, listen, if I can live with the daily reality of abnormal tissues affecting many if not all of my systems then so can you. Life is a wonderful thing but the truth is that many people live in pain and that could be you one day. Make peace with that.
In a world where we can be anything then please try to be kind and supportive. You never know the battles people face and even if you are well, we are all one accident or illness away from needing help. And that is ok.
So be like that Harvard doctor - show some sympathy.
With love
xx