Coping With ME/CFS: Two Steps Forward, Three Steps Back


I’ve been sick with ME/CFS for almost 20 years and I am beginning to believe that you never fully learn how to deal with being chronically ill.  I think I have come a long way from where I used to be but I’m still not where I want to be.   In my own opinion, living with ME/CFS is like being handed a life sentence for a crime I didn’t commit.  I try my best to look at the bright side and to be positive but there are days when I feel so totally drained and miserable that nothing can make me feel emotionally positive.

When I decided to try working again a year ago, I felt emotionally better because the time away from home and the time around other people gave me something to look forward to.  It wasn’t long before I realized, however, that physically my body just isn’t able to handle it.  As much as I want to be out there working, I had to cut back to one day a week – 4 – 5 hours – and that’s all I can work. 

The pefectionist, type-A part of me makes myself sicker because of this constant guilt I haven’t been able to get past.  I feel guilty because I can’t be out there working every day.  I feel guilty because I can’t volunteer for a lot of the events at my son’s school.  I feel guilty because I have to miss his practices and games sometimes.  I know intellectually that I should never feel less than because I’m chronically sick, but I do feel like that a lot of the time.  

The past couple of weeks have been really rough for me because of my ME/CFS flaring and those steps backwards are starting to add up more than the steps forward.  I try my best not to overdo it, but even when I don’t overdo it, I still flare so bad some days you would think I ran a marathon or cleaned 10 houses.  Then when I flare, I start to fear doing anything because I’m afraid of getting worse.  It’s a constant cycle and a constant battle that some days, like today, I just get tired of fighting. 

This time of year is just so difficult for me.  I have to start taking anti-depressants and everything just to get me through the season.

If you liked this article, please share.
Share on Facebook0Tweet about this on TwitterShare on Google+0Share on StumbleUpon0Email this to someone


  1. All of it is very familiar to me.

    “In my own opinion, living with ME/CFS is like being handed a life sentence for a crime I didn’t commit.”

    I felt that way too, but let me assure you – recovery from CFS is possible!
    Never lose hope! It is not necessarily a life sentence. I served my best 15 years in the prison of CFS, but now am back in freedom. I really want people to know that there is hope..

Join the Discussion.

We'd love to hear from you - leave a comment below