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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

EmpowHER Guest

Excellent post, Jody. I was also astonished to find so little support when I became ill. For me, I didn't even get much of that "crisis support" at the beginning. Some friends disappeared; most of my family seemed to ignore what was happening to me and acted like everything was normal.

It took me a long time to realize that the problem was not that the people closest to me didn't really care about me. In fact, just the opposite - they loved me so much that they could not bear to face or admit just how sick and disabled I'd become. I finally realized - after many years of distress - that much of my family was in deep denial over what had happened to me.

Finally, my mother and I hit rock bottom in our relationship, and I laid it out for her in a 6-page letter - exactly what my life was like now and what I needed from her. It worked, thank goodness. She sought counseling from a specialist in families of the chronically ill and turned her whole attitude around. I know it was painful for her. We are now closer than ever, though other members of my family still prefer to pretend everything is OK.

Some people just don't feel comfortable facing the truth of chronic illness, so they hide their heads in the sand. It certainly makes things harder on us, the sick ones, but - as you said - it is not our fault.

By the way, I am also blessed with some wonderful friends who have never left my side during this 9-year struggle and for whom I am very, very grateful.

Thanks for the thought-provoking post!


July 12, 2011 - 8:03am
(reply to Anonymous)

Your mother's change for the better is the only story of its kind I've ever seen. I think it could be very helpful if you would blog about that and maybe your mother could write about it.

July 17, 2011 - 7:13am
EmpowHER Guest
Anonymous (reply to Anonymous)

Oops - didn't realize it would call me Anonymous, so I'll sign more completely -

Sue Jackson

July 12, 2011 - 8:04am
HERWriter (reply to Anonymous)

Yup, Sue, I think denial from loved ones is common. I think too some just really don't realize how severe CFS is. They may think they're just seeing us looking laid back. They don't realize the noise and chaos and pain we deal with.

That's great about your mom. So happy to hear your gambit was successful.

July 31, 2011 - 1:00pm
EmpowHER Guest

"Four years ago, I found treatment that worked for me, and now I am making a comeback."
Thank you so much for sharing your thoughts and experience...
Pls tell which treatment that worked for you - I have been sick for several years now, and I am desperate to get "my life back"...

Best of wishes

July 12, 2011 - 8:00am
HERWriter (reply to Anonymous)

Hi Liz and Anonymous,

I encourage you both to check out my website, www.ncubator.ca where you'll find a couple of sections that go into some detail.

Thanks for writing.

July 31, 2011 - 1:30pm
EmpowHER Guest
Anonymous (reply to Anonymous)

Yes, I would like to know what this treatment is as well :)

July 14, 2011 - 2:46pm
EmpowHER Guest

You did it again! You put down on paper the feelings that I have in my heart!
Thank you.

July 12, 2011 - 7:18am
HERWriter (reply to Anonymous)

Thank you Nielk for your words. I am glad to know this article spoke up for you.

July 31, 2011 - 12:54pm
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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.

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