BLOG POST by Becky Orpin
It was just over a year ago when Jane contacted me via a local COVID-19 support group, asking if I would be willing to come on board to help her with some admin for SEDS.
It is always extremely difficult to get to know someone over the phone, but as covid times would not permit us to meet in person (as perhaps we normally would in this situation) the interview had to be conducted in this way.
Jane, quite clearly wanted to know as much about me as possible.
What was my background? What could I offer her? How could I help?
But when it was my turn to ask Jane about herself, I was left speechless...
I got a real sense of her need not only for support from a practical point of view, but also a desire for real understanding and recognition.
Her background and story are truly inspiring, and she quite literally blew me away in that very first call.
Unlike many other volunteers at SEDS, I do not have Ehlers-Danlos Syndrome or Hypermobility Spectrum Disorder….in fact (quite embarrassingly) I hadn’t even heard of EDS before speaking to Jane that day.
Yes, I hold my hands up.
To me, hypermobility was a term that I only really ever heard mentioned around the parents at my daughter’s dance school – meaning some students were a bit more ‘bendy’ than others.
Yes. That was me too.
Guilty as charged.
But...a year in - I now know how naïve I was to this illness, and all it’s co-occurring conditions.
It’s complexities. It’s differences.
And I can only apologise for that now. But I am learning.
I am learning how it affects those who suffer – each with their own individual symptoms - no two the same, making it extremely hard to diagnose, and very often hidden or misdiagnosed as something else completely.
These amazing people, struggling against those (like me) who have no idea what these silent disorders are, and how it is affecting their daily lives.
How, without proper recognition, it's extremely hard to get the right support and treatment. Not to mention frustrating.
I did an awful lot of research at the start - not only because I want to honour Jane and do her proud, but also (quite importantly to me) because I want to be able to help and advise her members, and to try to understand what they are going through - just as Jane does.
I can’t ever know what it feels like, but having this new learned knowledge is really helping me to help them.
My awareness is developing, and I am learning every day - more and more, in order to try to be able to help this amazing community of people.
Everyone’s stories have touched me.
Jane is a real inspiration.
She is far stronger than she knows.
Humble. Honest. Amazing!
The entire SEDS community is really incredible.
There is a real sense of companionship and loyalty amongst it’s members.
The messages of support to one another and the constant sharing of knowledge is really moving. I am truly honoured to be able to help here, and I really cannot express enough the need for more awareness of EDS.
I've seen it first hand, myself.
Patients deserve a better understanding.
More needs to be done - and although research continues to happen behind the scenes by incredible Drs and experts…nothing is more important and powerful than awareness.
And I am here to help do just that.