Posted in Explaining ME

Hanging the Sign on the Door

There are people in my life unaware of my new friend.

For example, the postwoman, who wakes me every few months to sign for a package. To her, I’m the lady who always answers the door in her dressing gown, looking somewhat dishevelled.

There are the shop assistants at the health store, who assume I leave work early every Friday, to which I always respond “yes”. Which isn’t a lie entirely, I did leave work early one Friday, except it was on May 18th 2012.

Then, there are those I might not see for years, when suddenly we are catching up on all there is to catch up on in a food isle and I can’t avoid telling them. I find these encounters most difficult. There is the awkwardness of not seeing them in so long and the knowledge my information may lead to that prolonged silence or nervous, high pitched giggle.

During one such meeting, an acquaintance assumed I was fit and healthy and quizzed me about my training schedule, aware the last time we had met, I was ankle deep in running and racing.

For a few seconds I responded with silence before adding dubiously, “Actually, I’m sick, I have ME”. Without thinking, she blurted out “but you look so healthy” before reining herself in and following up with questions and concerns.

I love it when people ask me questions and I love educating people on myalgic encephalomyelitis. However, when I’m pushing myself down a food isle, or leaning against a counter, reciting my debit card number over and over in my foggy head, well, I’d rather not have the additional energy expenditure. Selfish, I know.

Thankfully, during such instances, my husband often comes to my rescue and does the explaining for me.

One such moment occurred a few months ago, bumping into a shared acquaintance neither of us had seen in years. She asked after our work and my husband told her all he was doing. Then she turned to my wall of silence and my husband cut across saying “she’s a crock, she hasn’t worked in ages.”

I guess there isn’t any one way to tell someone about my new friend…