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Isolation and Chronic Fatigue Syndrome : You May Be the Only Person a CFS Sufferer Has Spoken to Today

By HERWriter
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For years, the only people I spoke with, outside of my family, were people working in grocery stores.

For years, my only forays out into the world were on shopping errands. These were carefully thought out, carefully timed. Was I having a bad day? Better not go out. Was I having a decent day? Goody, I could dare to spend half an hour's energy buying food and laundry soap.

Alan would make sure I had his cell phone in case I couldn't manage under my own steam, in case I ran out of steam. He was prepared to come and rescue me if I needed it. So we would both take a deep breath, and off I would go.

Many of those years, it took all I had to navigate through the store, leaning heavily on the cart to keep my balance and to keep me on my feet. I didn't make small talk in the aisles. My clock was ticking and my wick was burning, and I was always aware that if I'd estimated wrong, I would burn out and be a crawling mess by the time I got back home.

So I strove to be an efficiency expert, in a most inefficient set of circumstances.

At the checkout, the clerks would say hello, ask how I was. I knew it was part of their job, but it was a taste of normalcy and it helped me. I would answer in kind and no more, because my grip was tight on my energy bag, and didn't dare let any more of it out at a time than absolutely necessary. Because, hey, I still had to be able to get back home.

Those trips cost me, often putting me back in bed when I got home. But I found it worth the price. I found that I needed contact with the outside world. I needed to see other people and be seen by them.

It helped me to know that though I might be just this side of non-functional, and though I maybe had only been dressed for 10 minutes (at 4 in the afternoon), the people in the regular world looked at me and saw a regular person. And that would help get me through till the next time I could make the trip.

And so I offer up my thanks and appreciation to every grocery store clerk, every librarian and every bank teller who has a courteous word for their customers. You have been anchors for me over these years of illness, and I am grateful.

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Just a quick note to say thanks for your resonse... and that I relate to almost ALL that you say and will write more here and definitely contact you asap!... It's 2:20 a.m., which is really, really not good, but too common for me!

July 6, 2009 - 12:22am

Hi Helene,

Thank goodness for the internet. Because except for my husband, my kids, my mom and my naturopath, it is the only place I get any real response.

Having my family helps against the pervasive isolation I experience. But I don't know anyone here in the town where I live, that is like me. And outside of my family, there is hardly anyone in my town, any longer, who is interested in knowing me, or if they are, it's a well-kept secret. :-) I had to look past my own real life, to the internet, in my hunger for interaction for other people. Thank God for the net.

I sympathize with how very isolating it must be when also living alone. I give credit to you for being able to manage. My husband saves my bacon on a regular basis. Awhile back, I went a year without going into a store. I just ... stayed home ... all the time.

I know what you mean about the bank. Before I finally had accepted that this was beyond me and left it to my husband, I would do the bank. And I'd have to write stuff down and rehearse before I went in there, know exactly what to do, if I was to have a HOPE of things working. If things went differently than I'd planned for, I was lost. I had to count on the teller knowing exactly what she was doing, and grit my teeth trying like mad to understand WHAT she way saying. I walked out of there countless time with absolutely no clue what had happened, hoping I could piece it together at home, with no idea if I'd gotten or deposited the right amount of money and in such a stress-induced head stone and body stone that it took all I had not to bump into people or walls or fall down the stairs on the way out.


And yeah, it's alot like being drunk. Or on a bad acid trip.

Have you found anything that helps you with your symptoms? Dietary, or supplements? Pacing yourself? Scheduled (and unscheduled :-) naps?

Let me know. There have been some things that have helped take me from that state I described to something much higher-functioning and less distressing.

I hope you write back. Or you can contact me through my website or my new blog.

Take care. Have hope that things will change for you.


July 5, 2009 - 6:58am

(this is me, above!--Helene)

July 5, 2009 - 12:06am
EmpowHER Guest


You have just described what my life is like (14 years of CFS/Fibro/MCS)! My energy may be a TAD higher than what you describe, but other than that... I could completely relate. And there is NOone I know personally, like me.

My day is slow, my schedule is very late... (i live alone, which is very tough)... and I like to stop by the local coffeehouse mid to late afternoon when I can, just to be around people! Yes, and I am so much more grateful for every interaction everywhere I go.

Wow, I'm really bad with the bank, too. (Or any transaction, really). I have been known to walk away before my change has been given. Or even more often... be standing there, when a transaction is finished... not really knowing what is happening (I'm thinking, "what just happened? are we done?" and then I quickly apologize and mentione how tired I happened to be 'that day' (if they only knew)! )... I describe it to others as feeling a bit drunk.

I notice I also have a hard time at social gatherings or events, literally spacing out about when to go home or what to do next (if it's day time... can I also handle an errand? See a friend?... I just can't seem to process it all. if I can't figure it out, it usually means I'm in a flare... and this is often!)

Thanks so much for writing this; it means alot.

I need to sign up here!


July 4, 2009 - 11:57pm


I know what you mean. I'd have to really plan out what I had to do before I'd go out.

Spontaneous things just couldn't happen, and I couldn't handle unexpected stuff. Especially things that had to do with numbers.

Going into the bank used to put me into a tailspin, even if there were no surprises. I'd walk out of there, feeling like I was going to bump into things, numb and buzzing, and not entirely sure that I'd completed whatever I'd gone in there for. And often, I'd have to go right to bed afterward and stay there.

May 21, 2009 - 5:53pm
EmpowHER Guest

I would try to order things in advance, at places like the video store, so all I had to do was pick them up when I arrived. Too much time spent looking at the stacks of videos would ensure a long and painful relapse.

May 20, 2009 - 11:55pm

Thanks Diane. I appreciate your observation.

I know when I first realized the truth of this myself, that it had literally been years since I'd talked to anyone outside of my family, except for the folks who man the counters and tills in my town, I was shocked.

It just sounded so ... extreme. But then, being chronically ill is an extreme situation.


May 20, 2009 - 10:11am

What a shockingly simple revelation. And it's absolutely true. Regardless of whether a person has CFS, depression, an anxiety disorder or something else that keeps them at home the majority of the time, interactions with these "ordinary" people become fairly extraordinary in the effects they have on us.

Great post, Jody. Thank you.

May 20, 2009 - 9:25am
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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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