When I was sick, I didn’t know how to tell people what had happened to me. The official definition of ME/CFS/SEID didn’t help. It’s a group of vague symptoms that occur for 6 months or more. It’s not even a disease – it’s a syndrome. And when I was able to be up and around, I didn’t look sick. People didn’t see me on the days when I was bedridden and unable to function normally.
I did make an effort to explain what was happening to me and thought that I had been successful with a few of those closest to me. I didn’t realize until after I wrote my book how many people never understood despite my efforts to explain. My sister came to me in tears after she read my book, apologizing for not knowing how sick I had been.
Make an effort to talk about your ME/CFS/SEID struggle. If you have a copy of my book, share it. Ask others to read it. There are many other personal accounts of struggles with ME/CFS/SEID. Share the ones that match your own experience. Make every effort to communicate what has happened to you. Have you had any successes? Please COMMENT on this blog or Send in your thoughts and I’ll post them with your permission. You can use the Contact Form or send an email to Martha at DefeatCFS dot net. And Guest Blogs are most welcome!
Look for a weekly posting on Tuesdays. And consider being part of the conversation.
Be Well Again,