ME is in the media again, and finally it’s something fee from bias, something… true. Jen Brea, from the bottom of my heart, thank you for your TED talk. In 17 minutes you said it all.
ME destroys lives, ME kills people. Two simple statements, both or which the medical field don’t understand. Decades of stigma has left doctors confused, unsure of the truth, clutching at straws. And I get it, I understand ME doesn’t make sense. But that means that instead, we are diagnosed with something else. And that something is that our symptoms are ‘all in our head.’
If you talk to any ME sufferer you will hear their battle to get diagnosed, and you will probably think why do we put ourselves through it all. The answer? Without a diagnosis, you loose hope. People don’t believe you when you say your sick, but doctors can’t figure out why. Doctors look at you as if you are a lost cause, not worth their time anymore.
I was humiliated by no less than 5 different GPs. Even though I went private in the end, I still had to fight tooth and nail to get referred to a Consultant. I broke down in the appointment with my private GP, it came down to me begging through tears. I wouldn’t wish the experience on anyone. But I was lucky. My consultant not only believed me, but he recognised the signs that I had undiagnosed EDS too.
The experience didn’t stop there. I still have medical appointments, I still meet new people every day that don’t believe ME/CFS exists. Try fighting against that, it’s soul destroying. Stop telling me that the illness that ripped apart my whole world isn’t real. Just stop.
Too be honest, not much changes once you are diagnosed. But, now you have something to work with. Something to research. And as Jen Brea said, a whole new world opens up to you. You are no longer alone, you find out there’s other people that have been forgotten by medicine too. You gain a family of people who believe you, and you all come together to fill the void left by doctors. Honestly, I don’t think I would have survived these past 4 years since I got ME without my world on Twitter.Thank you for being there when I had no-one else to turn to.