“I had lunch with some of your old colleagues yesterday and we were talking about you.”

Never a good start to a conversation when your relationship to the mentioned parties ended the day you stopped working.

“Oh, who?”

The people mentioned are acquaintances, only one actually worked with me and it was before ME/CFS struck.

“I told them you are heading for Texas.  We all agreed you must be doing much better to be able to do that!”

What is it about this conversation that riles me so?

First, I’m pretty certain not one of these people actually has a clue about my disease and what I go through on a day-to-day basis.  They know as much about my personal life as I do theirs – nil.  I would love to have tea and share experiences in person, (haven’t heard from most of them since disappearing from the work place) just please don’t make me the subject of your chats with others.

Secondly, it’s one thing to have someone tell you face to face that you look well, but to assume I am better without knowing all the facts – well, that makes you an ass, as the old saying goes.

“The big push will be to get you back to work,”  I remember my doctor telling me. She went on to say that work is the last place one needs to go when recovering from a long-term illness.  Social interaction is especially important to help normalize again, and then when able, to travel.  Work is so much more stressful, and despite what insurance companies want us to think, does not add to quality of life which is so essential for healing.

That none of these able-bodies individuals understand that, I get.  From their viewpoint people on disability get to lounge around all day and do fun stuff.  (I’ve sat in so many meetings where I’ve heard this about those away on long-term disability, as if being ill is something to desire.)  What infuriates me, is that the messenger, a so-called close friend, hasn’t even spent any time with me in nearly a year, and yet, she is making a pronouncement about my condition.

I cut the conversation short, of course.

“She says I must be so much better,”  I tell my husband when he asks about the call.

“Twenty percent,” is his response.  “You are maybe twenty percent better.”

Deciding to sell our house and live full-time in a motor home is my husband’s creative solution to managing my disease.  Together, with input from my doctor and psychologist, we have developed a plan to embrace life despite the challenges we face.

I still have ME.  I still struggle on days to get out of bed.  My legs continue to give me problems.  My brain doesn’t work right.  Some days I feel worse than ill and pain is out of control.  I have to watch what I eat and how much stimulus I subject myself to, and despite all this, I’ve decided to keep on living.  Worse thing that happens is that I die trying.

I guess that’s too hard of a concept for others to understand.  Easier just to pass judgment.