CFS isn't a choice!!!! frustrated by people's remarks

Discussion in 'Fibromyalgia Main Forum' started by Shannonsparkles, Jan 29, 2006.

  1. Shannonsparkles

    Shannonsparkles New Member

    Some days - not many - I am well enough to talk on the phone for an hour or so. This Friday and Saturday were those days. I try to call people from my church, since I have a list of their phone numbers, even though I don't know them well.

    The first one I called, I had talked to before. She runs a ranch and is a busy person, and I wanted to know how she was doing. She asked how I was... I said, fankly, I'm feeling worse. Have to lie down most of the day. Bedbound, well, couchbound. "If I were there, I would take away your mattress," she said.

    "Well, then, I would be floor-bound," I joked, trying to shrug it off.

    "I would take away the floor," she replied.

    "Then I would be dirt-bound," I answered. This was taking a bad turn, I thought.

    "Well, If it were MY daughter, I would give her a whack and tell her to get up and moving," she said, in the same joking voice. I wanted to reply, 'but then I would be dirt-bound AND bruised,' but I could see it was pointless. A tough part of CFS is not having the energy to defend yourself when people say dumb stuff like that.

    A nastier, weirder call was from the new husband of a friend of mine. He was really rude and I think a little crazy (so I can excuse the rudeness). It was my first ever phone call with him, and inside three minutes he was drilling into me about why am I not married and working. "I have a disease that makes me pretty much disabled and housebound - " I started to say, near crying because I was so tired and his tone of voice was shaking me up, and he shot back with, "Don't YOU talk to me about disabled!!!" And he launched into an account of all his stupid motorcycle accidents, skydiving accidents and surgeries, the pain he lives with, and, for the icing the cake, how he still gets up every morning and goes to work in his self-run donut shop. "I'm a pit bull," he boasted. "I never let anything stop me!"

    To make it worse, he started interrogating me about some about some really personal family matters, and when I hesitated to answer because of being exhausted and my memory difficulties (and because of the nature of the questions), he was like, "You're giving me some resistance here, stop being evasive and answer the question." I said carefully, "I have an illness that gives me cognitive difficulties, especially with memory, so forgive me if it takes a minute to answer." And he went on about how he had knew all about cognitive things because he had "studied psychology" and 'could help me' and how I should buy a web cam so we can communicate. Finally, I had to cut off the call, saying I was too tired to continue - and by then I really was.

    All in all, I think he's a nut, but after that call, all I could do was lay down and sob, because he had been so crude and insensitive, and just out of exhaustion. Then I started thinking back on some of the things he had said, and it strikes me that the guy's two fries short of a happy meal, so to speak. But it just bothers me that my friend has married him. Eloped even, no warning. I mean, I can't even stand the guy for five minutes over the phone - how can she live with him? And this is her teenage son's new stepfather.

    What bothers me about these calls (which I made using my OWN energy, what there is of it, to try and reach out and give someone a smile and see how they're doing) is that these people seem to believe that if I made an effort I could push through this illness and be out there doing things. They're both hard-working people. They've never had a disease like this. But they think they know.

    All I want to do is to work. I yearn for it. I want to get up in the morning and have something to show for it at the end of the day. I want my muscles to ache from activity, not just for a medical reason that I don't understand. I was a giving person, even when my health started to decline. I threw my heart into everything I did. I did not choose to be sick this way. Being housebound is not a vacation or a getaway.

    I wish there was something I could say to people to make them understand what it's like to be truly unable to do the things I want to do. That remark from that guy about 'being sick is no reason not to be married'...! How can I meet a guy when I have to lie on the floor for most hours of the day in perfect silence reading a beginner-level novel and shifting from side to side when I hurt because that's all I can do?

    Guess I just have to let these comments roll off my back. I call a lot of other people besides these two, and even though they're all ignorant, they're not mean on purpose, and most of them try to understand. Even with these two guys, at least they weren't TRYING to be mean.

    Thanks for the venting space. ((((( ))))) Shannon
  2. TeaBisqit

    TeaBisqit Member

    It's the same old thing. People who are healthy, but suffer an injury absolutely do not understand this disease. Because all they have is an injury that will heal. They don't get that we do NOT heal. Our illness doesn't go away. I go through this all the time because we live near two handicapped people. And they use a wheelchair and backbrace, but they aren't sick. They just have limited mobility. But they actually have twenty times the life I have. They go out all the time. They go shopping, they go places. And it's like, God forbid you mention this illness to them, they start with, "Oh, yeah, you're sick? Ha!" I get zero sympathy or understanding simply because I don't look sick enough. They don't get that I am not well enough for visits, and very often will try to impose on our household, even going so far as to ask why they aren't invited in. And it's like, "Excuse me, but I'm not well enough." They don't get it. I'm lucky if I can make it into the kitchen to make something to eat once in awhile. I'm not well enough for company. I'm not even well enough for phone calls most of the time. And no one who doesn't have the disease has any understanding, sympathy or compassion :(
  3. EllenComstock

    EllenComstock New Member

    I guess I am pretty lucky to not have anyone talk to me like that. If you haven't already done so, I would cross off these two people on your list.

  4. hopeful4

    hopeful4 New Member

    I'm sorry for these demoralizing, upsetting, rude experiences you have had with these two people.

    People like this are not worth your energy and effort. Having them understand even a little of what you experience daily is just not going to happen.

    Please don't waste your precious time on defending yourself, or explaining yourself. You owe them nothing.

    Like everyone here, I have also been hurt by thoughtless, ignorant, self-centered people. It helps to develop boundaries. Takes practice, but it helps.

    Sometimes I have to visualize myself surrounded by a very thick wall of light to protect myself. Also it has helped me to change my expectations, realizing that most people just don't get it.

    Have you heard of Dr. Judith Orloff? She is a psychiatrist who wrote a new book: "Positive Energy Practices: How to Attract Uplifting People and Combat Energy Vampires" I've read one of her previous books which had a section on this topic, and I found it helpful. Maybe your library has a copy.

    I also use this affirmation, maybe it can help you:

    **I invite people into my life who nurture and support me.**

    Wishing you the very best,

  5. MamaDove

    MamaDove New Member

    This reminds me of something from my past...

    I went in for surgery to remove a 4 lb mass from my abdomen, an emergency situation due to endometriosis over the July 4th weekend back in 1993...

    My best friend at the time actually compared her stay in the hospital to mine...Mind you her stay was to deliver her 1st child, my Godchild...

    She never came to see me, the bbq and party still went on without me and even my brother and his wife decided a phone call to me wishing me well would suffice as they went on their weekend to the Poconos...

    Now I don't know about any of you, but I am the type of person, if a family member or loved one is sick, injured or esp. in the hospital, everything else goes on the back burner...

    These toxic people, whose petty lives always come first are no longer worth my time and what little energy I have to expend...

    I no longer speak to my brother, the selfish, lying thief he is and my ex best friend has not changed a bit, still a selfish dimwit...

    I guess my point is, esp. with these illnesses, our energy is something that should not be taken for granted and when I get a little I ONLY do things for the loves of my life, those who I know would do it for me...

    It is sooooo sad that we still have to deal with incompassionate knuckleheads...No wonder most of us are housebound, why go out and have to subject ourselves to this crap...It's everywhere!!!

    That husband of your friend sounds like a real genius...Maybe next time when he falls off his motorcycle he will be fortunate enough to have forgotten his helmet...Then you can call him up and tell him a few things.That's if he can hold the phone or understand what you are saying...I don't like to sound hateful, but as a wise old soul once told me, "You are what others make you".

    May I suggest if you have these people on speed-dial, delete them now!

    Sorry, you wasted your precious energy on these nitwits...Next time, come here and talk to us...Luv, ALicia
  6. bettydroop

    bettydroop New Member

    What A complete idiot! My GOSHHHH.

    Im sorry maybe I am wrong but it really doesnt sound to me like they are TRYING to understand one bit! People like this (and yes I do know some myself) I think... like to think they are better than you SOMEHOW by thinking look at meeeeee... I am soooo tough! I am a pit bull and nothing can stop me!!! We whoppee ding dong for you I say. Oh yeah you just pull yourself up by your bootstraps and get your little fanny movin' cause you don tlet NOTHIN" stand in your waaaayyyyy!!! Well good for you- but sorry mr. genius and Mrs. genius' out there in the I am tougher than you, you lazy person world, I got news for ya! You are comparing apples to oranges. If they think they can EVEN compare to what you are going through they are crazy! They are so completely different!

    Perhaps you could get on here and just find some literature to have them read and tell them how intelligent, you know they are, (*wink*) and they will SURELY be able to read this material and understand the complexities than you go thru day in and day out, and HOW it is very different from what they experience. There are OODLES of things here to printout at this site -Iam sure, and HOPEFULLY you can drill some sense into these UN HELPFUL "friends" of yours.

    You sound like a darling, caring , person and you dont need people in your life that would treat you that way. I dont get why you rbest friend even LET her husband talk to you that way. I am so FLOORED by that! REALLY! Honey... you deserve SO much more!!!

    Big hugs and I am sorry you had to listen to that crap.

    Sincerely all the best~~~~~~~~ Karen
  7. bunnyfluff

    bunnyfluff Member

    Not worth your time or energy. Take up a craft.

    Toxic IGNORANT people will just make you sicker. Tell the one guy "being stupid is no reason to keep talking".

    My God, where do you live???
  8. urge2soar

    urge2soar New Member

    It saddens me when others feel it is their duty to judge. I am sorry that you felt like you had to defend yourself.

    The other day I received my double-issue of the CFIDS Chronicle. It has some outstanding articles in it: Research, Etiology, Aspects of the Illness, Treatment and Personal Stories.

    I urge you to go to cfids org...I hope that it is okay to post in this manner. There is so much information available on the site as well as a place to request a copy of the newest double issue.

    I wish you well.

  9. Hippo

    Hippo New Member

    I get the "CFS is a choice" thing from New Age friends of mine, and I just HATE it. I would suggest you re-evaluate how you spend your telephone time. I know first-hand how awful it feels to reach out to people and have them smack you with hurtful, ignorant comments. I have been sick for over 20 years and have made many, many mistakes in my dealings with people. I have found that, after painful experience, that keeping my feelings to myself and minimizing telephone time is the only thing that works for me.

  10. angeljoe

    angeljoe New Member

    I use to be such a go getter. I am completely opposite now than my old life before this DD. Just two years ago I was working 65 hours a week. Some of those hours were mandatory but I loved making money. I would get off work at 3:30am and get my son up for school at 6:30am. If my daughter got up then I would get a 2 hour nap before going back to work.

    Everyone I know had made comments about me changing so much. I understand what you mean Shannon. I would still be going without sleep if I was able to work at all. I can't make anyone understand that I am physically drained.
    My DR says my body needed shutting down and with a fall down my stairs at home it happened. Not long after my fall I was full blown Fibro and CFIDS. I wish I could give you advice but I haven't any at all. My Dad lives 3 hrs away and everytime he calls he says "You're sleeping your life away." Vent anytime you want Shannon.
  11. cutie_pie

    cutie_pie New Member

    Hi Shannon. I'm new to this message board but not to CFS. I've had it for 8 years now and I face the same stupidities from people as you do. Healthy people just don't get it and they won't get it until they or someone close to them gets sick with CFS. Back when I was first diagnosed, people would ask me what was wrong with me and I'd tell them and they would look at me and ask what's that or simply say "well I'm tired all the time too but it's no reason to stop working". I would find the latter comment so irritating because these are healthy people telling they are tired but it's not unexplained fatigue they have...what they have goes away with ONE good night's rest and it's because they do too many activities and don't sleep. I also had a so-called-best-friend who claimed to understand me but she didn't. I later found out she'd bad talk me behind my back. In her mind, I was choosing not to work and I was "set for life", as she put it because I was fortunete enough to get disability benefits. And she'd make me feel bad for being housebound, like she's better than me because she goes out. Or if she'd invite me somewhere and I couldn't go because I was too tired she'd have attitude with me, like she thought it was an excuse to blow her off. Or she'd tell me "just make sure you rest all week so we can go out on the week end". Anyways, she just became too much for me to deal with and friends shouldn't make you feel bad and worthless, quite the opposite, they should make you feel good and complete. Needless to say, I let go of that "friend" and alot of stress did go away. Now I find myself almost lying to people when they ask me why I don't work. I just don't have the energy to get into the whole CFS thing and it makes me feel like I have to justify everything to strangers!
    Over the years I've found that comparing CFS to a bad case of the flu works because everybody can sympatize with the flu and how you're housebound or bedbound. And I also add "imagine if that flu never goes away" that's how I feel most day. Usually, I get an "oh" from people and they drop the subject.

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