It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Chronic Fatigue Message Board
Post New Thread   Closed Thread
LinkBack Thread Tools
Old 05-10-2007, 09:29 AM   #1
Senior Member
(female)
 
Join Date: Mar 2006
Location: Hilo, HI
Posts: 283
tawnyjade HB User
What do you tell people?

I have become increasingly frustrated when people tell me how good/healthy I look when I can barely fake a smile.
What is a good way to let people know that you really are not well, and you shouldn't be driving or trying to communicate intelegenly. Because every thing is such an effort, and find myself really fighting to speak, I know I sound like I don't know what I'm talking about with my business dealings, etc.
I just want to, without sounding like I making it up or whining, be able to say "I'm glad you think I look well, but I'm really sick and it's everything I can do to even yalk to you"!
Okay, done venting...
Thanks in advance for any advice on how to let people know that I am sick and looks are deceiving.
Tawny

 
Old 05-14-2007, 09:09 AM   #2
Senior Member
(female)
 
Join Date: Mar 2006
Location: Hilo, HI
Posts: 283
tawnyjade HB User
Re: What do you tell people?

Any suggestions, anyone?

 
Sponsors Lightbulb
   
Old 05-14-2007, 09:52 AM   #3
Veteran
(female)
 
Join Date: Apr 2006
Location: Victorville, Ca USA
Posts: 356
MOMOFBOYZ HB User
Re: What do you tell people?

Hi there! I HEAR your frustrations. I still 1 1/2 yrs into this have nieghbors, friends and worst of all family members that do this. I had to practice this to get it down. You see, I spent the first six months soooo angry about people not believing or getting it that I was sick that it was hard on my marriage. Then I realized what I was doing and had to make a real effort to figure it out.
When aquaintences ask I just say I am fine. I have good days and bad days. If they mention I look good I just say thank you. After all this group of people shouldn't affect me if they believe or not.
The friends and neighbors that ask with more frequency or curiosity I tell them even if it takes that nosy next door neighbor a hundred times that I have a chronic illness that will not go away. And that I have good days and bad. If they happen to ask on a bad day I simply say this is a bad or hard day for me.
To close family I even sent cfids articles to make it clear that even though I look fine I am very sick. After that I keep it the same stock answer. I have good days and bad. If you feel good tell them I actually feel good today. If you feel like hell tell them so. You don't have to elaborate just keep it to stock answers.
My husband and my Mom are the only people that I whine and complain to. They totally get it. And I vent to them.
Someone told me when I was so angry at everyone for not believing me. That my pain was private not to share. Like a period maybe. This helped me to grasp I can be in the worst pain and only the special people that really matter in your life needs to get it.
Sorry this is long. You sparked all kinds of feelings in me. This disease is very lonely. No one can understand completely b/c we don't understand either.
I hope this is easy to understand. I ramble a lot.

God Bless, Deena

 
Old 05-14-2007, 06:16 PM   #4
Senior Member
(male)
 
Join Date: Nov 2006
Posts: 225
AlwaysTired247 HB User
Re: What do you tell people?

I put up a good front. No one knows unless I tell them, and I read them really well, before telling them. Insults really hurt me.
__________________

 
Old 05-15-2007, 09:00 AM   #5
Senior Member
(female)
 
Join Date: Mar 2006
Location: Hilo, HI
Posts: 283
tawnyjade HB User
Re: What do you tell people?

Thanks Deena. Your response makes complete sense! I have no problem not worrying about the acquaintances. I don't have the energy for them. My problem is with the good people who care about me, but think when I look healthy there is no way I could not feel well. I think I'll send an e-mail about ME/CFS, and let them know this is what I deal with every day. I've seen good articles, but now that I'm looking for something with a simple explanation I'm having trouble finding it. Any suggestions with this?

AlwaysTired, thank you, too. I think it's a good idea to put up a good front for the same reason. I am very sensitive, especially on the days I feel especially bad.

Tawny

Last edited by tawnyjade; 05-15-2007 at 09:02 AM.

 
Old 05-16-2007, 05:04 PM   #6
Member
(female)
 
Join Date: Jan 2007
Location: CA
Posts: 67
violaroses HB User
Re: What do you tell people?

yes i understand. you dont look sick, you look healthy. and I understand about speaking clearly and how much energy it takes/ one past friend told me i spoke like a drunk. it hurt. what i got used to saying was i am happy emotionally and still sick physically. - when people asked.

 
Old 05-18-2007, 09:02 AM   #7
Junior Member
(female)
 
Join Date: Feb 2007
Location: Oxford
Posts: 17
Maenad HB User
Re: What do you tell people?

This is a really hard one to deal with as I think I spend a lot of time quietly on the defensive assuming noone will believe me/understand. I've been ill for seven years, and despite treatment related improvements over the past three years am still struggling. I started working part time in January 2006, and only 'came out' to my boss a few weeks ago, as by then I felt I'd proved my reliability/fitness to work and was telling him more as a curtesy than through necessity. He's been great, saying that he'd never have known etc., which I found a mixed blessing. I realise that in a way I've been backing myself into a corner regarding my illness as the fear of being judged and treated differently keeps me from telling people, which in turn puts pressure on me to pretend everything's fine when it isn't (or to sound like a hypochonriac who when asked how she feels is always saying 'bit rough at the moment'). I think this is yet another cruel aspect to the illness, stemming from the prejudice that surrounds it and the fact that yes, at face value, we often look well (I often think that all the resting means that on the surface people with CFS can look in good shape). Anyway, I haven't really answered your question. I suppose if pushed I'd think about what it means for people to believe/understand how we feel, and perhaps the answer is to have more faith in our ability to trust/believe how we feel and not need others so much. Easier said than done though (I remember a friend once telling that actually she thought I had a really nice life, which made me realise I was doing way too good a job of hiding how ill I felt etc. - I think to her it looked like I had a perfect stress free existence!!). I really wish I'd spoken to her about the stress of not being able to work/study, the loss of confidence, identity, self-worth etc. Perhaps next time!!

 
Old 05-18-2007, 09:50 AM   #8
Senior Member
(female)
 
Join Date: Mar 2006
Location: Hilo, HI
Posts: 283
tawnyjade HB User
Re: What do you tell people?

Thank you good folks for your replies/help! I think it helps to know someone knows how you feel.
I am still looking for the right thing to e-mail a select few so they can understand a little about why I decline so many activities.
For example: Our next-door neighbors are great and ask us/me over for dinner a couple of times a month. When my husband is working (firefighter 48 hour shifts) I try to get proper rest if I need it. I usually need it, as I try not to look lazy when he is home. Our friends don't understand how walking next door and talking and eating could be anything but relaxing. I think they think I don't really enjoy their company, but I really do cherish every minute with them. It's things like this that I wish I could explain that I just can't sometimes.

 
Old 05-21-2007, 08:27 AM   #9
Junior Member
(female)
 
Join Date: May 2007
Location: albuquerque, nm, us
Posts: 19
nmgrl HB User
Re: What do you tell people?

Yeah, this is a really tough aspect of this illness. In the past 5 years, I'd been doing well enough that most people I came in contact with had no idea that I had limitations like this. Only those closest to me knew that I couldn't do some "normal things". When I crashed this spring, it became necessary to be more authentic with more people about what's going on. I tend to be careful about who I share with. If they are people who I *think* will be understanding, then I'm learning to risk honesty. But after being honest, I try to move on to other topics, ie. "how are YOU doing?" : ) In other settings, with clients, or with people where there is really no earthly reason they need to know, I keep it to myself. I guess, for me, a rule of thumb is: is this causing me stress to not be more honest with this person? If so, I need to be clear with them about what's going on--usually they are supportive, and if not, that's really their limitation, even if it hurts me some. I have brother who *wasn't* supportive 15 years ago when I became ill. I always had the impression that he thought I could somehow get over it, if I just tried hard enough, which hurt. More recently, he's been having his own mystery health problems, which frighten him, and he's really had a turn-around. He's even apologized for his inability to be there for me, when I really needed him. So...people all have their "stuff" and their limitations...but they can learn and grow, too.

 
Old 05-28-2007, 09:55 PM   #10
Junior Member
(female)
 
Join Date: May 2007
Location: WA State
Posts: 32
lightnerbride HB User
Re: What do you tell people?

Quote:
Originally Posted by tawnyjade View Post
Thank you good folks for your replies/help! I think it helps to know someone knows how you feel.
I am still looking for the right thing to e-mail a select few so they can understand a little about why I decline so many activities.
For example: Our next-door neighbors are great and ask us/me over for dinner a couple of times a month. When my husband is working (firefighter 48 hour shifts) I try to get proper rest if I need it. I usually need it, as I try not to look lazy when he is home. Our friends don't understand how walking next door and talking and eating could be anything but relaxing. I think they think I don't really enjoy their company, but I really do cherish every minute with them. It's things like this that I wish I could explain that I just can't sometimes.
I completely understand and I'm in the same position. Thank goodness for my very understanding parents, a few good understanding friends, and my husband who trys to understand! I gave several of my friends this letter I got a copy of that was written as if it was the CFS or FM talking. It was by a doctor who developed FM during med school. I think it helped them with out having to get too deep into everything.
Best Wishes

 
Old 05-28-2007, 10:03 PM   #11
Junior Member
(female)
 
Join Date: May 2007
Location: WA State
Posts: 32
lightnerbride HB User
Re: What do you tell people?

Quote:
Originally Posted by Maenad View Post
This is a really hard one to deal with as I think I spend a lot of time quietly on the defensive assuming noone will believe me/understand. I've been ill for seven years, and despite treatment related improvements over the past three years am still struggling. I started working part time in January 2006, and only 'came out' to my boss a few weeks ago, as by then I felt I'd proved my reliability/fitness to work and was telling him more as a curtesy than through necessity. He's been great, saying that he'd never have known etc., which I found a mixed blessing. I realise that in a way I've been backing myself into a corner regarding my illness as the fear of being judged and treated differently keeps me from telling people, which in turn puts pressure on me to pretend everything's fine when it isn't (or to sound like a hypochonriac who when asked how she feels is always saying 'bit rough at the moment'). I think this is yet another cruel aspect to the illness, stemming from the prejudice that surrounds it and the fact that yes, at face value, we often look well (I often think that all the resting means that on the surface people with CFS can look in good shape). Anyway, I haven't really answered your question. I suppose if pushed I'd think about what it means for people to believe/understand how we feel, and perhaps the answer is to have more faith in our ability to trust/believe how we feel and not need others so much. Easier said than done though (I remember a friend once telling that actually she thought I had a really nice life, which made me realise I was doing way too good a job of hiding how ill I felt etc. - I think to her it looked like I had a perfect stress free existence!!). I really wish I'd spoken to her about the stress of not being able to work/study, the loss of confidence, identity, self-worth etc. Perhaps next time!!
I can't believe how much this hits home. I always look okay so everyone assumes I am and I just don't want to spend the energy explaining to everyone. I hate how my mother-in-law judges me! I've had a life of on/off chronic pain and fatigue and so it becomes easier to just put up a front a lot of times. When I had RSD as a child I went 5 years being called a hypochondriac, attention seeker, drug seeker, etc. before I was finally diagnosed by a non-judgemental doctor. I think that still affects how I deal with these "invisible" illnesses! So gald I joined this and can interact with those that understand! I hope someday I too can return to work!
Best Wishes to you.

 
Old 05-29-2007, 10:01 AM   #12
Senior Member
(female)
 
Join Date: Mar 2006
Location: Hilo, HI
Posts: 283
tawnyjade HB User
Re: What do you tell people?

Thanks! Do you know where I can find that letter? I think I saw it once and thought I'd share it with a select few.
I've had friends and family (good friends from Florida and my little cousin and his bride on their honeymoon from Georgia) visiting this past week, and have really over-done it. Too much sight-seeing, etc. I've been making my guests drive, and I'm still wiped out. These wonderful people don't know this Tawny. They remember the super energetic, fun, go-go-go Tawny. I want to be that Tawny again, but for now, at least, I just am not.
I'm sure they just think I am out of shape or lazy. Everyone leaves tomorrow around 3:00. I love them, but I don't think I can fake it another day and a half.
Oh my. Venting again...

Tawny

 
Old 06-01-2007, 02:32 AM   #13
Junior Member
(female)
 
Join Date: Feb 2007
Location: Oxford
Posts: 17
Maenad HB User
Re: What do you tell people?

Being worn out trying to keep up with visitors/friends etc. is sooo familiar. I find myself getting cross with others for expecting too much, not understanding, and cross with myself for not looking after myself better. I wonder if its just one of those impossible situations, exacerbated by the fact that our energy/symptom levels change day to day, hour to hour, so half the time we don't know how we feel and what we're capable of. Also, sometimes when people visit I want to stick my finger up to CFS and have a normal day, even if I do feel rough afterwards, though it self perpetuates the illusion in other's minds that we're OK really.....Recently I've made a point of discussing the levels of tissue damage measured as Free Cell DNA, which demonstrates levels akin to someone on low grade chemotherapy (in my doc's words). I find that helps to shut people up when they start with the 'we all get tired sometimes' line......

Last edited by Maenad; 06-01-2007 at 02:33 AM.

 
Old 06-06-2007, 03:22 PM   #14
Inactive
(female)
 
Join Date: Feb 2007
Location: UK
Posts: 53
Nixi HB User
Re: What do you tell people?

Quote:
Originally Posted by Maenad View Post
.....Recently I've made a point of discussing the levels of tissue damage measured as Free Cell DNA, which demonstrates levels akin to someone on low grade chemotherapy (in my doc's words). I find that helps to shut people up when they start with the 'we all get tired sometimes' line......
Hi there,
I've only recently had an official diagnosis of fibro and cfs. I've been off work since the end of Jan this year and my sick leave will run out at the beginning of July! You all seem so knowledgable about cfs- where have you managed to get this info? I've found only basic stuff on the websites I've looked at.

I can completely relate to all your comments about how people think you look well so must be. I've been really lucky that my friends and family have been really supportive- but I still feel that most, not all, of them think it is something I can get over with by 'positive thinking'. Comments are made and I just want to scream(if I had the energy) "It's not all in my mind! It's a physical thing!" I do find I get immediately on the defensive- maybe they don't mean that- maybe that's what I think- is it all in my mind? But I know it's not because I wouldn't be so frustrated at not being able to do things, and it wouldn't keep surprising me- both positively and negatively in what I can/can't do. I really have been optimistic and positive, but I'm running out the will to do this anymore. With work looming I'm really worried with whether I'll be able to cope, or if I'll end up loosing my job! My partner has been really supportive, but I think he thinks I should be better now, and so I'm trying to 'act better', which I think is reducing my recovery.

I'm really sorry to 'go on'. I'd really appreciate any direction you can point me in to learn more about this thing. I know I need to pace, and think that I am- but maybe not enough coz I'm still not right.

Thanks for listening

God Bless

 
Old 06-15-2007, 07:13 AM   #15
Senior Veteran
(male)
 
Join Date: Nov 2005
Location: sc
Posts: 590
hyper79 HB User
Re: What do you tell people?

Hi, good question. I have cfs/depression/anxiety and I even get the comment from my doctor on how well I look which I think will show itself on me in a few years. I usually make up excuses with friends who ask me to go places or pretend I'm too busy and say I'm fine,when I'm actually laid up in bed because nobody likes to be around a complainer.My inlaws have high expectations of me and are unaware of my condition, I'm sure they think I'm a lazy bum but I manage to sell online to make ends meet and to pay the bills but that does not always work out, I do not tell "inlaws"them because they do not understand,It hurts looking at how successful there other son in laws are, I have a friend who has similiar problems as I do and I've heard the comments they have made about him.I have been out of work for over a year now and even applied for disability, like someone else stated you never know how your going to feel when you wake up and that's the worse part,I've been denied due to my age and education.

Last edited by hyper79; 06-15-2007 at 07:15 AM.

 
Closed Thread

Similar Threads
Thread Thread Starter Board Replies Last Post
What to tell people Elizabeth1975 Cancer: Cervical & Ovarian 18 03-29-2009 10:00 AM
Wife never initiates sex, what to do? Samoh Sexual Health - General 24 03-25-2009 12:28 PM
pain meds, what would you do? monkey5 Pain Management 25 02-26-2009 06:22 PM
And all of a sudden Im walking well... what are people thinking? twink65 Multiple Sclerosis 8 08-31-2007 03:06 AM
Please help me know what's coming for us..small cell that metastasized MaryAlisha Cancer 9 07-06-2005 04:00 AM




Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Join Our Newsletter

Stay healthy through tips curated by our health experts.

Whoops,

There was a problem adding your email Try again

Thank You

Your email has been added








TOP THANKED CONTRIBUTORS



CFIDS (3), sleepykitty44 (3), paulapage1980 (3), wigs123 (3), Brodie179 (3), ladybud (3), mare50 (3), RickinOH (3), neveragain444 (2), mads12 (2)

Site Wide Totals

teteri66 (1136), MSJayhawk (941), Apollo123 (856), janewhite1 (823), Titchou (771), Gabriel (743), ladybud (667), sammy64 (666), midwest1 (655), BlueSkies14 (610)



All times are GMT -7. The time now is 11:24 AM.



Site owned and operated by HealthBoards.com™
Copyright and Terms of Use © 1998-2014 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!