“How are you?” my friend asked me the other morning – an innocuous enough question, if the recipient is not suffering from chronic illness.

Apart from the odd text here and there, I hadn’t talked to this friend for months, so I answered a pat:

“Better.”

I had really called her because I knew she was scheduled for surgery and I wanted to let her know I was thinking of her.   I hadn’t intended for this call to be about me.

“Well, that’s great.  So are you going back to work, or are just going to take it easy for a bit?”

Her question threw me.  Go back to work?  Take it easy?  WTF?

“You don’t need toxic people like that in your life,” my home care worker tutted.  “She has no idea of what you are going through.”

I think she might have been more incensed than me.

When are you going back to work? is a question that I have to answer every three months for my long-term disability provider.  It’s a problem that plagues me constantly.

I would love to go back to work – have worked since I was fourteen-years-old and always prided myself on my independence.   Losing my ability to be gainfully employed has been one of the great losses of ME/CFS.

“Well, I have a way to go before I can think about work,”  I responded after a long pause, and wrapped up the conversation.  This is the same friend that once told me I wasn’t doing enough to get better – that laying in bed all day was giving in too easy.

I laid in bed because I couldn’t physically get up; it’s the unholy truth about this disease.

I am better in that I spend less time in bed now.  I still have to lie down several times a day, and am generally in bed for the night around 6:00 pm, but the improvement is noticeable.  It hardly constitutes a full recovery.

“There are many things I have to accomplish before I can think about working,” I told my disability representative in our last conversation.  “I need to be able to manage the basics of living, such as laundry, shopping or driving. And I need to be able to rely on my brain.”

“I see,” he said, obviously making notes in the background.

I doubt it, I thought.  No one really understands the extent to which chronic illness invades and permeates the life of the person affected.  No one except those who have been afflicted.