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Chronic Fatigue Syndrome: With Friends Like These Who Needs Strangers?

By HERWriter
 
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Chronic Fatigue Syndrome related image Photo: Getty Images

For the chronically ill, life can be a long, drawn-out solitary affair. Over time, well meaning friends and relatives can drift away. The people you used to see in the stores, the bank, are no longer part of your life if you're too sick to leave your house.

Someone made the observation to me once that people are at their best during a crisis. If you're very sick for a short time some folks will be right there for you. But when something drags on ... Especially if it drags on for years ... Something like, say, Chronic Fatigue Syndrome ...

Everything they knew to say has been said. Everything they knew to do has been done. Your CFS is, in a sense, no longer an upset to the status quo like an acute illness would be. Your CFS now IS the status quo.

They have gotten used to it. What they don't understand is, you have not. You will never get used to it.

And what is old hat and part of the furniture for them is not a routine part of your day no matter how long you've been sick. You are no more "used to" the limitations and loneliness than you were three years ago. Ten years ago. Twenty-five years ago.

And even the nicest of chronically ill people will have times of fury over the fact that very few seem to bat an eye over the loss of their life. People who could do something to ease the grimness of any given day, have long since stopped. And we wonder, "With friends like these, who needs strangers?"

When I was healthy I was very active. I did a lot for the people I was involved with. Did it because I loved to make a difference. Did it because I wanted to. But after I got Chronic Fatigue Syndrome I was astonished to discover that it wasn't mutual. All these people I'd made a difference for — none of them were interested in doing that for me.

If I think about it for very long, an incredulous anger wells up inside me. So I prefer not to think about it much. But before my recovery began, when my days were spent in bed or in a chair by a window, you can bet this weighed heavily on me.

When I began to recover and made faltering outward steps, there were no celebrations, no ticker tape parades, welcoming me back to planet earth. No one from that old life I'd lost came to visit me. No one invited me out for lunch. No one suggested going for coffee or to the beach.

No one.

These were all conscientious intelligent people. I'd still have to say their affection in the past for me had been genuine. What to make of this?

It seems to just be something that happens. Healthy people have no inkling of what it's like for a person who is chronically ill. The emptiness. The alone-ness. I did it too back when I was healthy and didn't know any better.

A short visit, a small gift, a phone call or note, can make such a difference when absolutely none of these things are going on.

I'm writing for the chronically ill who go through this, to say, you are not alone. There isn't something wrong with you if you get angry and your whole view of life has been turned upside down by illness and by being dismissed.

And I'm writing this for the healthy ones who have been oblivious up till now, but who want to make a difference. Go in and find your sick friend. Don't expect them to come out and find you.

The playing field is NOT level despite what you may think you see. The onus is on you, if you care enough.

I spent 15 years losing the battle against Chronic Fatigue Syndrome. Four years ago, I found treatment that worked for me, and now I am making a comeback.

http://www.ncubator.ca and http://ncubator.ca/blogger

Edited by Alison Stanton

Add a Comment29 Comments

HERWriter (reply to Jac_15)

Hi Jac,

I love people too and it broke my heart to lose everyone I used to know outside of my home. I'm touched that you've posted this to your facebook. Hopefully some people will understand better what we deal with.

July 31, 2011 - 1:15pm
EmpowHER Guest
Anonymous

You made me cry, Jody.
Beautiful, and spot on.
Love, Bettine

July 12, 2011 - 10:11pm
HERWriter (reply to Anonymous)

Thanks Bettine.

Then I know I did good. Always happy to make you cry.:)

July 31, 2011 - 1:09pm
EmpowHER Guest
Anonymous

Great article!

July 12, 2011 - 4:01pm
HERWriter (reply to Anonymous)

Thanks! :)

July 31, 2011 - 1:08pm
EmpowHER Guest
Anonymous

We're only human and it's natural when we're suffering to feel disappointed and angry when people don't come through for us like we'd like. After 25 years of ME/CFS and through my 12-step program, however, I've learned that expectations of others lead to resentment and then self-pity. After having spent many years wallowing in self-pity, I've figured out that it is the most destructive place to be and work hard to keep it at bay. I try to live in acceptance; I recommend the book HOW TO BE SICK by Toni Bernhard who is bed-bound with CFS. No matter how much I feel sorry for myself, it doesn't change my reality but only makes it worse. This doesn't mean giving up hope that through research something will be discovered that will make me well again. It simply means accepting my reality for now. In working my 12-step program, I had the spiritual experience that is promised and it wasn't so much about G-d but more about how everything is not all about me. What a relief! And I discovered that even with all of my limitations I can find ways to be of service to others and stop thinking about myself all of the time. The less I think about myself, the happier I become. Can't seem to effectively log in and so my remarks are posted as anonymous. I am Esther Siebert in CA.

July 12, 2011 - 10:04am
HERWriter (reply to Anonymous)

Hi Anonymous,

Thanks for sharing your experience and insights. So many of us are in different places along our journey. I am happy for your sake that you have been able to work through the anger and get past it.

I think for some others, being able to express how they feel to someone else may be part of their healing process as well. They can end up instead denying their feelings and stuffing them down, rather than dealing with them and being able to move beyond.

I am happy to hear the serenity that is in your post. I'm glad to know that you have been working your way to peace. Thanks for writing.

July 31, 2011 - 1:05pm
HERWriter (reply to Jody Smith)

My goodness, Esther, where are my eyes? :) You have your name there big as life at the end of your post and I missed it, when I wrote my first response to you.

Thanks, Esther. :)

July 31, 2011 - 1:08pm
EmpowHER Guest
Anonymous

Another well written article Jody speaking for so many of us.

July 12, 2011 - 8:24am
HERWriter (reply to Anonymous)

Anonymous,

I'm glad the article resonated for you. Thanks for letting me know.

July 31, 2011 - 1:01pm
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We value and respect our HERWriters' experiences, but everyone is different. Many of our writers are speaking from personal experience, and what's worked for them may not work for you. Their articles are not a substitute for medical advice, although we hope you can gain knowledge from their insight.

Chronic Fatigue Syndrome

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