The CFIDS Association of America recently took a poll to ask its members which personal stories they were most interested in hearing about. Not surprisingly, somewhere at the top of the list were stories from those who had recovered. People want to hear about what others did to get better. They want hope. So I guess I should have known who would be at the bottom of this list, and which stories generated the least amount of interest. Who did they not want to hear from? Yep, you guessed it. People most severely afflicted with this illness. People who are bedridden. People like me.
Those of us fully homebound with this disease feel so isolated and invisible. We often (quite literally, in my case) don't have a voice. No one wants to hear our story. Not even, it seems, our own fellow sufferers.
But really I shouldn’t have been taken aback by this. After all, when I was still working full time, I often came across stories like mine, and for the most part, I didn't want to hear them either. It was too depressing and scary. I refused to believe becoming home or bedbound was even a remote possibility for me, and didn’t want to let the idea of it needlessly enter into my mind.
In fact, when I first got sick, I remember I actively sought out only those who had fully recovered from CFS. Not those who had merely improved, but only those who had completely regained their health. I did this because I firmly believed that was the only possible outcome for me.
People who had fully recovered were difficult to find at the time, but I was not deterred by this. If even one person had been able to restore their health after battling this illness, then that meant I could (and would) as well.
But it didn’t quite turn out that way. Not yet, anyway. :) If I could do it over again, I would have been much broader in how and from whom I sought advice and wisdom. I would go back and read the stories of those who had become bedbound, and I would listen to what they had to say. There’s a lot to be learned not just in hearing what people felt they did right, but also in hearing what people felt they did wrong. In many ways, I think I would have gained even more from the sickest of patients than from those who had gotten well, because their stories would have humbled me. I would have more fully realized what was at stake, and perhaps been better able to let go of the idea that I was invincible.
If I could speak as myself now to the highly determined young woman I was back then, this is what I might say:
First, don’t worry. If you listen to your body, truly listen to it, then it’s extremely unlikely you will end up anywhere near where I am now. Second, treat your body like the temple that it is. Eat healthy, meditate, stay only as active as your body allows, and rest when your body tells you to rest. Never put a job, other’s opinions or anything else above your own health. Similarly, don’t let your ego, your pride, your need to please or your desire to accomplish get in the way of doing what your body tells you to do. Letting my ego, my ambition and my need to please others take priority over my own health was, I think, my gravest mistake. It is something I still struggle with on a daily basis even today.
Now this isn’t in ANY way to say that it’s not possible to recover from (or live with) CFS while still working and keeping a comparatively normal lifestyle, of course. It is most certainly possible. Nor do I mean to imply one needs to in any way let go of ambitions or stop trying to achieve. Far from it. I certainly have not let go of any of my life-long goals, and given where my energy stands today, I achieve more now in one day, comparatively speaking, than I did in a full 40 hour work week. It is only to say I wish I’d learned earlier that, contrary to what I’d previously believed, the course that any given illness takes is not solely measured by the strength of your spirit, optimism or determination. If only it had been that easy. It’s about balance. Balance, pacing, and listening.
Of course, finding appropriate treatments (and, better yet, a cure) would be of tremendous benefit as well. ;)
In the end, I think the most important thing for all of us, no matter what level we are at, is to stay positive, trust that things will get better, and that the answers will soon come. And, without a doubt, to never let go of hope.