Joan McParland made this public post on Facebook a couple of hours after her MBE was publicly announced:
I am completely overwhelmed as I wasn’t expecting the news to be out until tomorrow so just want to offer my sincere thanks to every single person who has helped me along way in my own 24 year journey with
#ME.
Without the support of other patient volunteers and our family members, the charity wouldn’t even exist.
I am absolutely honoured and immensely humbled that somebody (and I will eventually find out who!) put details of my advocacy work since 2011 forward for recognition.
I received the letter informing me that I’d received an MBE on 12th May for services to the
#ME community, I don’t know if that date was planned or just a coincidence it was World ME Day!
After our charity conference on May 12th, I was a tad indisposed and I still am, so couldn’t open my post until a few days later and had to read numerous times before I understood the text.
Conferences are incredibly hard for obvious reasons but also incredibly triggering, as one has to stay focused on why and how we became involved in advocacy work, and to gather up the strength and courage to stand up in front of a room of healthcare professionals, educating them about the disease that took everything I held precious, over two decades ago.
We must too, carry each and every patient in our hearts during these occasions and remember whom we are representing. If we can change just one aspect of this disease for the better, the relief and satisfaction is an immeasurable reward, amidst the equally immeasurable (decades of) frustration.
There’s lots of adrenal surges needed and strong emotions before and after these events, and we all know this mix is guaranteed to bring severe PEM but the price we have to pay for our truth and passion. If this wasn’t the case we’d be doing such events weekly instead of annually!
Anyway, others can imaging how I felt at the time of receiving the letter and why it completely derailed me. This past month, I think I’ve relived every day of the hell of sudden onset
#ME in 1999, the physical onslaught and the lasting trauma and emotional pain when faced with the indifference and disbelief from doctors we turned to for help.
I hear this same story from other patients nearly every single day and often wonder just what it WILL take, to finally overcome the entrenched stigma surrounding this disease as the intolerable situation of fighting from our bed continues…..
So finally all I can say is, that I will use this great honour as one of the best opportunities I’ve ever been given, to continue to highlight our plight and raise more awareness about “the greatest medical scandal of this century”.
Thank you to every single person sending thoughts and gratitude for the work of the charity volunteers too, past and present, who put up with my brain-fog and constant confusion, and hold me up when I’m often ready to run away! Our events may appear super organised but I can assure you it’s all down to lots of boom and bust and pure luck we’re able to stay upright long enough to carry off these academy winning performances!
I will eventually reply to messages when a bit stronger and less of a blubbering, emotional mess!
