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What do you say when you don't want to explain?

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Posted 5/7/2009 8:42 PM (GMT 0)
What do you say to people that you really don't want to tell them you have FM?

If I make plans, then have to cancel because I am in pain, what do I say?  I really don't want to say I am hurting.  Then you have to explain.  If I say I am just not feeling well, then you hear "what's wrong?"  So what is the easiest way to get out of it with the least amount of discussion?  If the questions do come, how do you skirt around it?

Here are some examples of situations:

Children's friend's parents/playdates

Volunteering at school

Unable to attend daughter's Brownie outing

I could use some good lines.lol  I am not a good liar, so when put in that place it just comes out.  Or if I try to lie I feel & look really quilty.  Maybe if I prepared with a good line before hand it will go better.

thanks,

Doodie

Posted 5/7/2009 9:00 PM (GMT 0)
Doodie, you should tell the truth but don't go into detail.  If you make up excuses and then are caught, you will lose friends. 

 

I would tell the people that you deal with quite regularly that you have fibromyalgia.  It's a chronic pain problem and some days are better than other days.  You don't know how you are going to feel from day to day.  So, if you have to cancel a "date" you hope they understand.

 

If they ask you a bunch of questions, just tell them to do a google search on fibromyalgia and they will see all sorts of info on the subject.  It's a very complicated illness.  And then drop it.

 

I do understand what you are going through.  Telling them this is the best thing you can do.  They probably still won't understand but at least you are being honest with them and that will make you feel better.

 

Sherrine

 

 

Posted 5/7/2009 9:25 PM (GMT 0)
I would say "I'm sorry I can't make it today. I have a chronic nerve pain disorder, and sometimes the pain is just too much for me." That way, it's the truth, but there aren't any obvious follow-up questions.

I seldom say I have fibro, sadly - because I find a lot of people diagnose themselves with it and often are chronic whiners about everything anyway. Gives all of us a bad rap. Although anyone I have told that I have fibro has been nothing but sympathetic and supportive.
Posted 5/7/2009 11:31 PM (GMT 0)
I dont know why, but I get very embarressed when people ask me how I'm doing with the fibro. I always very quickly change the subject, I just dont like talking about it, I feel like it's my bussiness how I'm doing and not theirs. I always tell them I'm doing fine, whether I am or not. I guess I just dont want to hear why advise they want to give me or for them to think of me as a hypochondriac, like last time my aunt was telling me about this weird mouth spray she got at the health food store, and she wanted me to try it, so I took a spray of hers and it tasted so nasty, and it took 3 days for that taste to finally go away, I guess it's suppose to be some all natural thing to help with fibro type pain. But usually I just tell people when I cant do something that I'm just not feeling well, and when they ask what exactly is wrong, I just tell them that I must be coming down with something, and if they see me a few days laters looking like I'm not sick, then I tell them that it must of been something I ate lol. Plus not only that, some people still dont beleive in fibro so if I tell them that is my problem, they then think I'm lying, or that I'm a hyprochindriac, and I rather them not think of me that way. Most people know that I have lots of health issues, so they usually dont ask why when I tell them I cant do something.

-hellokitty
Posted 5/8/2009 2:02 AM (GMT 0)
It's obvious we all react very differently but a common thread is 'tell the truth' but to that I'd add...don't need to go into detail. Maybe have an alternate offer ready to suggest like...can we do something at my house on Sat? or whatever.

Another thing I have learned over time...Most people react to the word Fibromyalgia in one of 3 ways. 1) they've never heard of it and are clueless. Most of these folks are compassionate. 2) they know what it is and have all of the answers and if you would just exercise more and drink 55 gallons of gogo juju berry pit juice that was squeezed by antartic monkeys and it will cure you. and btw, these folks have had the worst pain in their back all week...lol 3) these folks are the ones you want to have as your friends. Whether or not they've heard of fibro they are compassionate. They are willing to listen to you and truly care. They also try to accommodate your needs.

If we are lucky we have a few #3's in our lives. I count my blessings for my 3's...lol The 2's?? never mind and I don't waste my time or theirs. But the #1's is who I love to talk to. I tell them that I have a muscle disorder somewhat like MS but not life threatening. That seems to do it right there and I don't often need to explain more. They know MS and take me seriously.

So, I've babbled enough...what was the question???

Chutzie...lol
Posted 5/8/2009 3:41 PM (GMT 0)
It all depends on who it is. If it is someone that I don't know well and probably never will I tell them I have auto-immune and muscle problems and some days are better than others. That's what I have told my neighbors so when they see me off balance in the yard they don't think I've been drinking. Close friends and family know what all is wrong with me but I get mixed reactions from them. I know some probably don't think fibro is real, some really want to know about fibro and some I don't know what their opinion is cause they don't talk about it. I just recently tried to explain it to my 19 yr old granddaughter that has a new baby so she would understand why I can't come see him everyday. I had never told her there was anything wrong with me, she thought I was just slowing down in my old age. She is a healthy 19 yr old she is not going to understand fibro but I didn't want her to think that I wouldn't like to see my great grandson everyday.

 

I have an event coming up in July, my best friend from high school's 40th anniversary party. It's an 8 hr drive and I don't know if I will make it or not. She knows I have fibro but I know she really knows very little about it and will probably be hurt if we don't go even though when she told me about it I explained I never know how I will feel from one day to the next.

 

So I don't lie cause I do have an auto-immune problem and muscle problems but it does depend on the person how deep I go into things.

 

luv and hugs

Marlee

Posted 5/8/2009 10:19 PM (GMT 0)
I have told people that I have a muscle disorder that causes trouble walking or standing for long periods of time. (that covers the cane when people ask questions). But recently I have started staying "It's my pim* cane yo." and they laugh and laugh and don't say another thing. Maybe a nerve disorder is easier to say. Some people are self absorbed and do not have anything to say or forget from one day to the next. Oh, and I have some number 2s in my life who can be very irritating. I try not to make it obvious that I am hurting and if someone asks, I just brush it off and don't talk at length about it. People who know me well are able to tell and give me a break. While at the conference a week or so ago, the group of friends just walked off and left me behind! They didn't notice I was not there. I thought I would catch up at the stop light, but it was green! So I had to call out - hey guys! I can't keep up. They were all more considerate after that.
Sue
Posted 5/8/2009 10:42 PM (GMT 0)

I have a harder time explaining the stupid Meneire's Disease than I do fibro.  With Fibro, I just tell people I have chronic pain and can't do this or that because of it.  Just had an e-mail from some friends in NYC that got us front row, center stage tickets to see Bob Dylan, Willie Nelson and Mellencamp in June. There will be ten of us.  I certainly appreciate the tickets...they were hard to come by but I don't know what I am going to do because it will blow my ear drums and set the Meniere's off  so that I probably won't be able to stand up to get home.  I am looking for some really good ear plugs as we speak.  I'm thinking of getting those whatchamcallit things that will make me look like Princess Leia from Star Wars.  Headphone thingys that construction workers wear.  I will be lookin' so totally fab!

The older I get, the harder it is becoming to explain my conditions to people.  My friend as RA...I GET IT!  When I say I have 'chronic pain' I think most people understand that more than if I go into the whole fibro-thing.

Huggies

Donna

Posted 5/8/2009 11:34 PM (GMT 0)
Wow that sucks that you have symptoms of Menieres. I have it/had it, too - and unfortunately lost all the lower-decibel hearing in my left ear (10 yrs ago). Can't put the phone up to that ear and write with my right hand, which is a pain. But other than that, I'd never know I had it. I guess it's another thing that's different with everyone.
Posted 5/9/2009 1:36 AM (GMT 0)
Donna,
If you do get the headphones, check out the (usually) more expensive ones that use batteries. We use them when we go target shooting. I don't know much about Menieres so I don't know if they would help or hurt. They do drive me crazy after a while. You can hear EVERYTHING around you but they dampen the loud sounds.

Some stores will let you try them before you buy them. Make sure you can return them.

Have fun at the concert!!!
Posted 5/9/2009 2:03 AM (GMT 0)

Dagger...or anyone...where do you buy those kind of headphones?  I don't even know what they are called or where to look for them. I need something to REALLY block out the sound and vibration.

Thanks

Donna

Posted 5/9/2009 2:05 PM (GMT 0)
My husband uses foam earplugs at work. He works in manufactoring, and the sounds are ear piercing. He brings some home because he uses them to sleep odd hours as he works shift work. I sometimes use them when my anxiety is high, and all the noises in the house bother me. They work really well.
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