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Are you ever reluctant about telling others about Fibro?

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Posted 4/22/2011 12:52 PM (GMT 0)
I am finding it hard to tell other people that I have Fibro. Mainly because I have so much wrong with me anyway (see my signature) that I am afraid that they are going to view me as a hypochondriac. There are times that I just can't seem to mentally focus on things and it makes me feel batty; I'm sure other people think I am probably on drugs! But I have such a hard time just to tell them that all these weird things are due to Fibro. Do you ever just keep quiet about it? Should I even tell them?
Posted 4/22/2011 12:58 PM (GMT 0)
I'm new to it, but I'm not telling many people because of the stigma (it's all in my head, it's a made-up disorder etc.) I also had a bad experience with telling my supervisor, and then her telling others. I don't want sympathy, either, so if I think they'll react like that I'm keeping mum about anything. YMMV, of course, so I can't suggest what you should do. Maybe it depends on how understanding you think they'll be.
Posted 4/22/2011 1:15 PM (GMT 0)
I never tell anyone about my Fibro.....but I am a man and we tend to not share those things anyway....

I feel that everyone has their own challenges...Fibro is mine. It is a personal challenge.

My boss knows that I have it.....but we havent talked of it since I told him years ago.

Of course my wife knows everything and is the only person that truely knows the depth of the effects of Fibro on me.

Posted 4/22/2011 1:27 PM (GMT 0)
I have a speech impairment and when I am flaring with my Fibro, I tend to slur my words because my mind can not concentrate on the words. I normally have to concentrate on what I am going to say so I can get the proper pronunciation of it anyway. So when I slur my words, people look at me funny - probably thinking I've hit the bottle or something. Then I feel the need to explain and that is one of the problems I am having as well - alcoholism runs in my family, but I don't drink but on occasion. One time my brother asked me if I was drunk (he was on the wagon) and of course I wasn't.

For the most part, people are receptive but there is NO way I am telling my SIL. I also have Ulcerative colitis so when I am having issues with that, she tells me of all these wacky diets that she is trying and thinks it will cure me. She is a bit closed minded to tell the truth. So I can just imagine what she would say about this!
Posted 4/22/2011 1:55 PM (GMT 0)
Because I'm very new to all this I am tossing up on who to tell. Mostly just my close friends and family who I am around on a daily basis. I am 26 and I don't think many of my friends would really understand what an impact it's having on my day to day lifestyle. Luckily I have a very supportive husband who makes me laugh on even the worst days:) I totally understand the apprehension in telling people!
Posted 4/22/2011 2:31 PM (GMT 0)
I've never been one to keep my mouth shut if I beleive in something.
Not that I use a bullhorn to announce to the world.
I'd rather try to have understanding then have to explain why I feel this way all the time.
I'm also the type that if you don't like it, tough. I am who I am and while I try to understand others and be supportive, if you're not there with me I don't dwell on the negative.
It is hard to not only handle all that comes with this but others who don't understand.
Just remember not to let all of this stress you. You have enough going on to worry about everyone else.
Posted 4/22/2011 3:08 PM (GMT 0)
Sherry, you don't owe anyone an explanation.  They usually don't understand anyway.  If I'm having a really foggy day and am embarrassing myself, I will laugh at myself and just say I have a cognitive memory problem due to an illness and then drop it.  That usually shuts anyone up and they do try to understand that far more than saying you have fibro.  It actually puts people at ease, too. 

 

I have a nice long list of illnesses too but most of my friends don't know I have them.  I go out with my friends to have a good time and forget about illness for a while so I don't mention stuff to them. 

 

Sherrine

Posted 4/22/2011 3:18 PM (GMT 0)
It depends. If I'm out by myself in public, needing a bottle off a shelf or a door opened, I just ask the closest normal-looking person if they wouldn't mind getting it for me, say I can't, and point to my back or something, and they are usually happy to. If they do happen to ask, I'll say, "I have a muscle disorder." (Of course, they usually just say, "You're fine!" which never ceases to tweak my funny bone - uh, no, I'm not, that's the point!!)

But if it's someone I know or there's a real reason to...I just tell them. You can tell when their eyes start to glaze over that they've had enough information, and that usually happens pretty quickly. If they're genuinely interested, I'll say, "How many hours do you have?" - to let them know that this is an all-encompassing condition - at least, it is for me. There is not one area of my life that has not been impacted by fibro. I am tired, though, of explaining every little symptom (I've had it for at least 26 years.)

If I had to suck it up and try to appear normal for a job, that would of course change things. I don't, so I'm one of the fortunate ones in that way. I look at it as an opportunity to educate people, for all our sakes. It's nothing to be ashamed of, and people should know that there are lots of people who appear perfectly fine, but are FAR from it. Sometimes, I'll ask someone to get down a half-gallon of milk for me, and they'll say, "Sorry, I can't, either!" Nobody can tell by looking, so we can't assume anything about anybody.

Debbie
Posted 4/22/2011 3:55 PM (GMT 0)
I was diagnosed over 22 years ago and at that time, I had never heard of fibro let alone anyone else I knew. I made the mistake of telling people at work and they looked at me as if I had two heads. I was in my 30s at the time and the man I worked for said to me "are you sure you aren't 10 years older than you say you are?" yeah, nice, huh? So now, I have a tendency to keep it to myself. I find most people really don't care. Those that do care about me know about it and understand.
Miriam
Posted 4/22/2011 3:57 PM (GMT 0)
Very wise words from everyone! Thank you :)
Posted 4/22/2011 5:32 PM (GMT 0)
I tell people most of the time. I have a big mouth and a lot of my coworkers (mostly who I talk to outside of the family), know I miss a lot of work and always ask how i am doing. I move slow and limp so they know when i am having a bad day. You would be surprised at how many people who tell me they know someone with it. They have sd they know how tough it is to deal with. I have heard of step dads, moms, aunts, etc. They usus tell me how they cope and what they do to minimize pain. People  seem to be starting to understand at least people I come in contact with at work. Helps a lot.
Posted 4/22/2011 5:41 PM (GMT 0)
I have a couple of close friends who understand and one of them has fibro too so we talk about it. But other than that, I don't tell many people. It is just easier for me that way. I look normal I guess so nobody asks me if anything is wrong or how I feel and I like to keep it that way. I have my cognative moments too and I am old enough to use that for an excuse. lol...

I hope that you find what is comfortable for you. To tell or not to tell.

Hugs, Karen
Posted 4/22/2011 10:30 PM (GMT 0)
Ha! I wish I was old enough to use the cognitive issues as an excuse! :)

I can't tell you how much I appreciate every single one of you! I have been dealing with this for a very long time but recently diagnosed. I truly thought I was losing my mind! I do have a couple friends who have this, but I never really felt comfortable discussing it with them...don't know why really. Maybe because on here I can remain anonymous?

Thank you all that responded, you have helped more then you can possibly know! :)
Posted 4/22/2011 10:42 PM (GMT 0)
I am fairly newly diagnosed with Fibro (March 14, 2011) and have found myself not wanting to tell people about it. I still haven't told all of my family members, only the ones I know will keep their mouths shut. The others I don't tell because I know they will be among the group of ("oh its all in your head", "You just want an excuse to be lazy", "you can't possibly be in that much pain") people. I get that enough from my hubby whom I had to tell about the Fibro, I don't need it from others in my family too. I don't tell others outside of my family because I don't want to have to explain what it is, or deal with the negative reactions from people. Not that I expect sympathetic reactions but I don't need any more negativity when I get plenty at home. So, I just figure its easier to keep my mouth shut and deal with it myself.

I hope you all have a great support system. I am finding (and have been told) that a strong support system is important.

Gentle Hugs to all,
Jen

*******************************************************************

High blood pressure, Hypothyroidism, Fibromyalgia, Degenerative Spinel Disease, Sleep Apnea, Depression, Anxiety
Posted 4/22/2011 11:07 PM (GMT 0)
I've only chosen to tell immediate family members and a couple of friends. I only tell others if I have to. Sometimes, I just tell people that I have a muscle disorder if I'm having trouble standing or walking.

Like you, I have a ton of different health issues, any one of which can be acting up on any particular day. If I told everyone all of the stuff that is wrong with me, they would probably think I was making it up. rolleyes

I'm with Sherrine, when I'm out with friends, I try to not think about it unless a situation presents itself where I have to do some explaining.

Hugs - Austen
Posted 4/23/2011 12:12 AM (GMT 0)
Jen,

I am so sorry that your husband doens't support you in this. I am so fortunate, even before I got the diagnosis, my husband thought I had chronic fatigue. He is wonderful, and I feel so fortunate. Do you go to any counseling at all? I am just saying because it is always nice to have support. And I think you deserve it. It helps too because depression can go along with fibromyalgia and just dealing with it alone is so hard. I am glad that you continue to come here, this is one of the best places for support. People here understand you.

Keep posting. And I hope that one day your husband understands what you are going through.

If only they could walk one day in our shoes, eh?

Hugs, Karen
Posted 4/23/2011 1:03 AM (GMT 0)
I guess I am used to people thinking I am nuts or a hypochondriac.  The fibro has been going on for years, only diagnosed recently.  Gluten intolerance is very hard for many people to understand also and I was sick with that for years and years.  So, it doesn't matter to me whom knows.

I had an appt with my PCP today and was telling him the rheumy diagnosed fibro.  My PCP wasn't surprised at all and we had a long discussion about it.  I have to say, most of my doctors are wonderful! smilewinkgrin

Posted 4/23/2011 3:02 AM (GMT 0)
I tell anyone who I have to explain why I need to have a seat or chair for. I am disabled and if anyone has a problem with me. Well I really don't care but I have been like this for almost 20 years and have had to explain my illness countless times, so I am used to this.

It is a real illness and if people can not understand that is their problem.

Kathy

Posted 4/26/2011 7:09 PM (GMT 0)
I have had to tell people lately :( I normally don't. Alot of poeple do not believe in this disease and I personally find it easier to keep my mouth shut about it. I also have meniere's disease (a disease of the inner ear). I had my left inner ear removed and am currently waiting on insurance approval for a bone anchored hearing aide. (hard to explain LOL)

Anyhow this flair up is really bad. running a swamp cooler (evaporative cooler) has been killing me:( I have guilt because my husband works 40 hours a week and then will come home and cook. No cleaning is getting done, i just can't do it. Aside from the pain, I have balance issues because of my meniere's. So bending over and picking things up is hard and makes me quite dizzy:(

So I don't feel comfortable telling people about my fibro along with why i can't walk straight or pick up anything off the floor or look under the bed or whatever. It sucks.

Ronney
Posted 5/1/2011 7:26 PM (GMT 0)
Just reading through all the post. It is very sad that we all have a real illness with real pain but it is like we all belong to AA and are ashamed to talke about it. I'm not judging. I don't talk about it to anyone except very close family members either. I am fortunate that my husband supports me 100% and my family doctor diagnosed me after not finding it to be RA, like he thought originally. I think the more awareness that hits the media the more we will all feel justified as it will verify all of our symptoms.

I don't want to be like this, I would rather jump, run, play, stay up and play cards all night, shop till I drop, and all the other things I used to enjoy. But I can't. When I try I pay for it the next several days. I have to keep myself to a very strict plan each day otherwise I will miss work. When stress throws me a curve ball from something I can not control happening within my family all the pain is there and all I can do pray it won't last too long.

My heart goes out to everyone! We have nothing to be ashamed of! We didn't ask for this or do anything to cause it. Even now I'm setting here typing and keep taking breaks to stretch my neck as it is causing me pain today. I only tell those closest to me. When I am having a bad day at work I make up something other than fibro to blame it on. I don't want them to think I don't have it all together. I think we will all be surprised all others around us that have it that haven't said anything when it is finally validated.
Posted 5/1/2011 9:33 PM (GMT 0)
I'm with the guy up there - the only person who really knows what I go through with what I have is my husband. The few people I even have contact with anymore, don't want to hear it, and in truth, they never really did. Lupus, Rhuematoid Arthritis, Fibromyalgia, MS - all those it seems people often don't know what to do with or how to treat you unless they've been around ill people or the disabled. I get tired of people being overly sympathetic and treating you different. When I do tell people, more often than ever now they all know someone who has it which is beginning to help with understanding. I was dx in '96 and I had never heard of it before.

I also get tired of hearing the 'oh, I hurt too.' They don't often provide us an outlet to talk. Well, we all know there is quality to Fibro pain that is far more penetrating and hurtful than regular pain and even when you have regular pain it's worse than normal in it's impact because we're already over sensitized so I guess I judge the person and my relationship/do they really need to know. And I'm like other people here. I'll say I have something else everybody can identify with and they don't look at me like I'm a leper. I've even had people after I tell them I'm disabled (like when they ask what I do for a living), act like I don't exist after that, stop making eye contact and talk to everyone around me so I answer that now with I used to be blah, blah, blah but now... and they handle that a lot better.
Posted 5/1/2011 9:44 PM (GMT 0)
RonniKay, I feel for you. I know exactly what you are talking about. I have a thing where both of my eyes want to be dominate. We've been stuck on the side of the road because I couldn't move. I sooooo know what you are talking about not being able to clean and the guilt of your husband having to do everything. I went to Physical Therapy/Dizzy Rehab for 6 months so I could learn how to distract myself (& drive again) and what my triggers were - like my H cannot walk off to the side in front of my- it will immediately effect me. I know what you have is different but I wonder if the distraction techniques and other rehab would help you? Just an idea. I sure hope it settles down soon :( Please remember you can't help it. It's not your fault. And things always change. Just love your Hubby a little more. I know I do mine :) Hugs!
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