Wednesday, August 5, 2009

A Personal Lesson in Humility

The CFIDS Association of America recently took a poll in which, among other things, they asked their members what kind of 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.

In that light, one can probably anticipate which stories were among those that generated the least amount of interest. Who did they not want to hear from?  People most severely afflicted with this illness. People who are bedridden. People like me.

Those of us fully homebound with this disease can 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, many of 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 scary depressing. 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 insight 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 failing 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 CFS. While full recovery is  rare, 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 (should they someday exist) 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.

13 comments:

  1. This is excellent, Laurel. I plan to make note of it on my blog. I think there is a need for both ends of the spectrum also. IF I knew from those who were really ill how devastating it can be to NOT listen to your body, maybe I would not be where I am either.
    I understand your feelings of isolation and not being heard. I hope you know there are a few of us to do hear each other! And care. That is why I like blogging so much...I have a voice!

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  2. Thank you, Renee. I really appreciate your kind words.

    I, too, think it's so important that we hear both ends of the spectrum. In focusing solely on those who had gotten well, I failed to fully realize what the consequences could be of ignoring my body. I really think I would have fared much better had I more fully grasped that early on in the illness.

    I have really enjoyed blogging the short time I've been doing so too. It is wonderful to feel like I have a voice, even in some small way. :)

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  3. Forgot to say.. I'd be honored if you made note of my blog on your own! It's nice to know what I wrote resonated with you. Thanks again for such kind comments.

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  4. Hi Laurel,

    Thank you for this post. It brought tears to my eyes. When I was at my sickest, I was housebound at best and bedridden at worst for two years (ages 24-26). I felt so isolated and did not know what was wrong with me (I had not yet been diagnosed).

    Though I have improved significantly since those two years, I am not fully recovered. There are times that I fear losing what little health I have gained back. It is this fear that makes me appreciate every day that I am able to go to work.

    I have not forgotten what it was like to be too weak to speak. I still remember what it was like to feel invisible. The loneliness was crushing at times. Because I didn't have a diagnosis, there were no support groups for me to join or people to talk to about how I felt. Doctor after doctor did not take me seriously.

    I became an advocate to help educate people about this disease and to give a voice to those who are too ill to speak because I was once one such person.

    You are not invisible to me.

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  5. Thanks, Alyson -- you are so sweet.

    I think there are probably a lot more of us out there who are or were homebound than most people realize. Many are too sick to be online at all, so we don't hear from them. That's in part why I started blogging as well -- to try to be a voice for some of the sickest out there.

    I'm sorry to hear you were once in a similar boat, though so glad to hear you are now doing better! That gives me hope. I know you are still quite ill, but I hope the answers come soon so that you (and all of us) can fully get our health back!

    Thanks for helping to be a voice out there. It is so needed! And thanks again for your kind comments. :)

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  6. Laurel.
    I came across your blog through Renee's. Isn't blogging a great way of connection? I thank you for your honest posts about your illness. I have been there on all counts. I have recently had a set back, but remember days and sometimes weeks of fatigue free days. This is what gives me hope. Balance is for me a major shuffle at times, depending on what's happening around me. Anyway far too much to write here, so will put my words to my journal for today.
    P.S. You are not alone in this!
    In Love.
    Rose

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  7. Thanks, Rose. Blogging is great! :) And yes, finding the right balance is definitely a daily adjustment. Sometimes an hourly one. ;)

    I do have my fiance in all this, and he has really been like an angel to me. He has severe CFS as well, and we hold each other up, even if long distant. :) Hope is definitely key!

    Thanks for visiting my blog! Hope you see some improvements very soon. Best wishes.

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  8. Hey Laurel. You are very right to bring this point up and I think it is a very important one. I believe I also did alot wrong--leading me to my last relapse. I cared and listened too much to others opinions and views about my illness for which they knew nothing about, and I allowed this to influence my actions. I also put the importance of my job before listening to my body.

    I know I will NEVER put work, etc ... over my health again. However I still feel I am learning these things and struggle with it on many levels.

    Thanks for a great post!!

    I think you are great! You are a true inspiration.
    You are NOT alone x : )

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  9. Thanks, Treya! Sounds like we both made a lot of the same mistakes. And I'm right there with you -- I continue to struggle with those lessons to this day. It's a huge challenge, to say the least.

    You are too sweet to say I'm an inspiration. :) I think we all are really. Anyone who can get through this illness day in and day out, and yes still stay sane, positive and hopeful is an inspiration in my book!

    Thanks so much for your comments!

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  10. It's so true and you articulate this beautifully. I really resonated with this post. Being housebound/bedbound does lend itself to being invisible especially in our society.

    I'm so glad you are letting you voice be heard. We really need it.

    I have learned more from other patients than from doctor's. You raise such a good point about how important the voices of the homebound/bedbound are because we do have invaluable lessons to teach others.

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  11. Thanks cfs warrior! :) I agree -- those who are bed or homebound really do have so much to teach about this illness. It's great to have the blog world as a medium to do so. Thanks for your sweet comments! I'm glad what I wrote resonated with you. Hope you are doing okay and hanging in there!

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  12. I also agree Laurel but more because of the expectations one should have regarding different treatment programs. I have tried so many treatments and each time was told, "This is the one. You should start feeling better very soon,” only to get my hopes up and to have them dashed repeatedly. At least now, I know that if someone tells me to stand on my head for 10 hours a day every day and you will start feeling better right away, I would still do it because I so dearly want to get better but my expectations would be more moderate. The emotional rollercoaster can almost be as difficult as the illness.

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  13. Mroy99 -- so true, and such a good point to make. I can't tell you haw many guarantees of wellness I have received, and promises of a cure. I used to believe all of them 100% each time, and it was always such a disappointment. Now I still try what people suggest, and still have the hope it will work, but I try to not set my expectations too high. I laughed at your comment about standing on your head for 10 hours. :) The things I have done to try to get well -- including having someone come to my apartment years ago to dance and move around me in a way that was supposed to bring the Universe's energy to me and expel any negative energies from my body. She was very nice, but somehow.. it didn't work. :)

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