Thanks for sticking with me when things got tough

“Thanks for sticking with me when things go tough”

I received this at the end of an email from a lovely EDS client. I work with some very complex cases. There are always going to be ups and downs. A condition like EDS or HSD is never linear. I am prepared for the unexpected.
It was lovely to receive this message and yet it saddened me too. These words are very loaded. It tells us what we’ve come to expect. It would never occur to me to abandon a client when they need support the most. I’m going to stick around for as long as I’m needed. I may not know all the answers, but I’ll find someone who does. Working with likeminded colleagues is a true blessing.
And yet those feelings persist due to the neglect so many of us have received with our condition. The disbelief, being told there’s nothing that can be done more to help, being told we are exaggerating our symptoms, being told it’s in our heads and to get some therapy. I hear stories like this every day.
I strive and hope this will change. By raising awareness and helping to spread the word that EDS patients need to be heard. I firmly believe there is always something that can be done to help. It may mean changing things up and getting creative. It’s time the narrative changes. Our collective voices will eventually be so loud, everyone will stand up and listen.
If you need to hear this today, you are most certainly not alone.

  • Mischa Brown
    Posted at 14:20h, 05 April Reply

    Well said and so true. We need to be heard, supported and encouraged, and being understood by a fellow 🦓 is such a. blessing!

    • Jeannie Di Bon
      Posted at 16:19h, 05 April Reply

      Thank you – I’m so glad this resonated with you.

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