I know this sounds like a weird question, but had to ask because I am a little embarassed by my FM, here's why.

This condition is invisible, you can look very healthy and be as sick as a dog. Family and some friends can be put off by my "I want to be alone" moods, and explaining the problems of FM to them is just plain useless.

Some people who THINK they know FM have all the answers, they say "Put on a happy face, go exercise, you will be fine. Doesn't work.

Alone time can be very important to me, especially during a flare up, sometimes this can be taken as "being lazy" yet, I still LOOK okay.

With my FM, I can be just okay for a while, and other times anti-social depending on my pain level, fatigue level, etc, yet I still LOOK okay. This can be confusing to others, I suppose.

I have to admit, I am embarassed by the complexities of this condition. If I broke my arm and I was in a sling, I feel I would be more credible to most people, hopefully, my arm would heal in time, the sling would come off, and I would be on my way to healing. Not so easy with FM.

Does any of this make sense to you? Hugs, Chelz.

Chelz
I understand COMPLETY. Just last week I saw someone who I hadn't seen for a couple of years - she knew I had been ill. She looked closely into my face at least twice with the same comment "you look well". I "never apologise -never explain" any longer, so said nothing. There is always the hint of "mmmm! I wonder if it's psychlogical". So this is the reason one may feel embarrased - but don't.

Needless to say, after these social occasions, I don't look so well - tired face, red eyes and extra fatigue.

Also, I think sometimes I take special care to look good, I don't know why - maybe habit and the fact that they are far and few between. Cheers, TN

I do also. How can you not be. People are so judgemental. I think some of us do look sick though, I can see how pale my face is and dark circles and sometimes red patches. I feel bad that no one believes us. I don't understand why? Maybe if more men had this illness it would be looked at differently. Ruthie

I am not so much embarassed by the FM as by the CFS. I have stopped telling people I have CFS because of the strange looks. I don't even think my new doctor believes it exists. I have just given up trying to explain.
I'll just stick to the FM from now on. More people have heard of it and seem to accept it without a lot of questions. I guess I'm just chicken!! GB66

[This Message was Edited on 05/30/2009]

Am I embarrassed by my FM at times. You betcha!@!!

The way I combat it especially at work is to be very open about my condition. I have people ask the dumb questions, but overall my it has been more good and honest questions than bad.

Now my daughters school is another thing all together. At times people think I just cannot be bothered. They see me coming to school for trips and such. What they do not reliaze is that when I am able to do some things it is only through carefull planning and much rest before and after.

My responses to all the stupid "lazy" remarks is probably not the best, but I tend to get quite short and scarcastic.

But mostly I tend to feel bad for people like that, because chances are that someone close to them will have some version of an invisible illness. I have had a couple of people who have come back to me with an apology. They have a new understanding of what I go through.

But is is extremely hard to deal with people who think it is a cop-out.

This is probably the reason I have a small group of very close friends who understand when I tell them I can't do something, that I truly can't.

What you are feeling is absolutely normal. Most of us probably have the same feelings from time to time at least.


Hugs

T

because people tend to try and evaluate every move you make or don't make. Like"She could do that, but she says she's sick" or "She looks good". The appearance issue gets to me because people want you to look like s... and don't understand that it took a lot of energy to just get out.

If it's a good, you try like heck to enjoy yourself and face the consequences later. But if you feel that inquiring look from others, it sort of kicks the fun out of it.


This includes family, friends and other acquaintances.

The one good thing I have learned is to try to not be judgmental about people because it hurts.

you were able to say what I was thinking, thank you.

I struggle with this.

gentle hugs

that goes like this: "It's none of my business what others think of me"...

You have to be strong about who you are. That can take time and work but very very possible.

I grew up in a small town thinking mentality and moved far away and was able to work on that brainwashing of my early life.

If you can't physically move, then you need to work on the mind physically moving away from undesirables.

I DO get frustrated. I guess I'm like most of the others who have posted here.

I met a very good friend for lunch not too long ago and discussed the fact that I had been thinking about filing for SSD before long and she said: "You'd better stop looking so good if you're thinking about filing for disability because you don't look sick at all. They'll take one look at you and deny you in a second!" This would have really hurt my feelings but I know her well and she was just trying to be helpful.

There are many people here at work who think I do the bare necessities to complete my job and I think it really irks them. The fact of the matter is that I know my work inside out and have been here for over 25 years so it is very easy for me to know how to get things done. BUT they don't understand that almost everyday it takes all the energy I have when I don't feel like getting up out of bed and they don't realize how my shoulders burn like someone is sticking a hot poker on my back or how I feel so sick I could toss my cookies when I've been here at the computer all day and my hands hurt so bad I can hardly stand it..Nope, they have no idea how we suffer.

So, that said, let them think whatever that will. If "they" don't like the way I do my job then they can find someone else to do it and I will file for SSD because THEY decided it is time!

Most of my family understands and I am very blessed for that! Some of my friends haven't figured it out yet. They never ask if I need any help with anything or how I'm doing. Guess they aren't my REAL friends after all - are they?

Hang in there! You're not alone.

Blessings,
Rockismom

I'm not embarrassed, but like many others have found it to be very frustrating. If the people could see me when I'm at home, they'd get a whole different view.

I think many of us have learned to live with the pain. Sometimes there is NO hiding it. Often when I walk into work, it's obvious what kind of day I'm having. I can't help but walk gingerly.
I've had people say "you're feeling much better today, I can tell." Nope, its just that I'm not showing it as much.
I do actually get understanding from most people. If they don't, they don't tell me. Ironically, the one person, my best friend, is the one who never asks me how I feel, how Im doing (with FM) Still gets a little peeved when I don't want to run errands with her etc. I just try to go to others for the support or ear that I need.

I don't think any of us are "babies" about our pain, I think it's actually the opposite, we are tough survivors!

So embarrassed, no, but I definitely choose who I share details with. I try to educate people that I come into contact with regularly, giving examples of what we Fibro sufferers go through on a daily basis.
Looking fine is hard!!!! I agree, a sling, a cast, crutches etc. is much easier for other to understand.

Have you ever read the spoon theory? I just love this because it's short (less than 2 pages). I can hand it out to people who don't understand that I'm flat out of spoons.

http://butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

The whole "But you don't look sick" web site is great!

while i am NOT anti-social [in fact, i get lonely and wished i people had more time to spend with me, but i know folks are busy, too... but when you're not able to work and the day stretches on and on, life can be dull and feel rather empty.] it can be very embarrassing when the bus has to kneel for me, lol.

or i struggle to get up from a chair. or people ask why i'm limping and i'm not aware that i am. [my hips often hurt due to their being a FMS pressure point for me].

or the almost always ever present fibro-fog becomes even thicker, lol, and i cannot remember the word or words i need to fully express a thought.

that it truly GALLS me when i mention to friends i haven't interracted with in years that i have fms and am on sddi, they don't respond to it at all. geez, if someone told me they had a disability, i would tell them that i was sorry that they struggle with it. and that i'm relieved for them that they are getting a steady income.
one friend totally was unresponsive and the other told me that my life sounded interesting. bah! i think some people like to gloss over stuff.
i am not looking for pity, but a little compassion goes a long way. just a brief acknowledgement would be nice, too.
however, a non response, though insensitive, beats the heck out of a judgement call, which i see many folks here are victims of. or that 'pull yourself up by your bootstraps' bit.

'There are many people here at work who think I do the bare necessities to complete my job and I think it really irks them. The fact of the matter is that I know my work inside out and have been here for over 25 years so it is very easy for me to know how to get things done. BUT they don't understand that almost everyday it takes all the energy I have when I don't feel like getting up out of bed and they don't realize how my shoulders burn like someone is sticking a hot poker on my back or how I feel so sick I could toss my cookies when I've been here at the computer all day and my hands hurt so bad I can hardly stand it..Nope, they have no idea how we suffer.'

gee, this truly saddened me to read this. why IS it so hard for people to find it in their hearts to feel compassion? i don't have cancer, but i can easily understand the fear that people who have it deal with, or their great discomfort, either from the disease itself or the treatments they're enduring.



[This Message was Edited on 05/29/2009]

Having to explain this dd. Some people are totally clueless about FM/CFS.

I feel like a total loser, like I must have done something bad in my past and now I'm being punished. My mind is so scattered and I find myself calling myself an idiot all the time.

Other people probably think I'm strange, I'm very self conscious about the way I move, grimace in pain, and space out when conversing w people. I feel like I don't fit in anywhere, can't keep up w anyone. Makes me sad, makes me feel worthless.

Unfortunately, I have MANY bad emotions tied to my physical ailments. I know some of it is due to depression, how can you not get depressed when you feel so lousy all the time? It's always something...

And yes, I'm embarassed by my life...or my lack of life. I see other people living their lives while I sit and waste my own life day after day. It's awful.

You with your post had the courage to say how I feel. I appreciate how you explain your feeling and really can relate to it and know exactly what you are talking about and the emotions you feel.
Take care and bless you,
Faith

[This Message was Edited on 05/29/2009]

well i sure was embarassed today- at pharmacy i had to give my phone number. i was foggy and i could not remember my phone number. at all. i kept trying. i am only in my 30's. this was ridiculous! so finally i just made a phone number up!

at least the pharmacy tech was nice about it. it tried to make a joke about it.

ehhhhh

bigmama2

usually I am not embarrassed, but am either frustrated or, at times, angry....or just sad....but I do get embarrassed when the brain fog is bad and I can't seem to put together a sentence bc I can't find words, or I say something that makes me sound stupid, or I forget people's names (& I mean people I know very well and see almost weekly at Bible study or church - & since there are not that many people in my life anymore bc I cannot get out much, it would seem that it would be easier to remember the names of those who are around!)....I also get embarrassed when the shaking/jerking stuff gets bad - today I managed to go to the bank, but I absolutely could not write my account number down bc my hand was jerking so bad - I kind of laughed it off, but it was embarrassing

I never knew anyone felt this way, like I do.

I don't tell anyone that I know (even at work) that I have been diagnosed. My husband, my family, and his family are the only ones that know. I know at some point, I will have to tell more people just b/c of my limitations and behavior.

I'm embarassed b/c I there are a lot of people who don't "believe in" fibro...they think its an excuse to be lazy, take meds, or just get attention. I also don't want to be labeled as a "hypochondriac."
Even when I take my medications at work, I try to make sure no one is around or looking at me. I just started a new job a few months ago & I don't know what I will do when I have a big flare and cannot function normally or have to call in late/sick b/c I cannot get out of bed due to pain. I guess I'll deal with it when it happens.

But yes, this makes a lot of sense to me and I know exactly how you feel. I almost wish there was something visual people could see or that FM didn't have the stigma attached to it so I could tell people.

Rockismom's comments were right on the head with me. took the word's out of my mouth.
Yes, it's so hard...no one can understand. that's why on this site we have each other.
hang in.

Good post. I think we can tell from the responses that most of us have felt embarrassed or at least frustrated in some way having to do with others perception of us because of our illness (es).

I have been both, and like many others, now limit what I tell people about my health. I have lately begun to say that I have retired, which is true, just way before I was supposed to, and in the middle of my career. Maybe people think I am now independently wealthy. LOL

BigM2 I identify with what you've said, as usual.

Hey hermitlady. Yes it 'is always something', and we always have to keep carrying on in spite of that, so tiring. I have felt many times like I didn't fit in anymore because I couldn't go and do like everyone else. It can be very depressing.

My son was recently pretending to be me saying 'okay now what was I saying again, I forgot?'
He didn't mean to hurt my feelings but it did. I DO constantly forget what I am saying, loose my train of thought.

Reading what Jam said reminded me of the Serenity prayer. Accepting the things we can't change and letting go of the rest (including others perceptions of us) is something I am always striving for.

Sometimes the letting go might be that of our old lives BD (before this disease : ]) and old expectations, and developing new ones.

I think everyone here has something to be proud of.....ourselves. You all are some of the bravest people I have ever met.

with love
vivian

Thank you for such a nice post. i just came home from visiting my sisters and mother for a week and am completely drained and exhausted. It was hard for me to "keep Up" w them, even my 85 yr old mom has more energy than me. And my sisters are sooo energetic, my polar opposites for some reason. It really made me sad to feel so lousy compared to them, having to rest frequently and not able to go go go like they do....and I'm the youngest!

I wish I could feel proud and brave like you mentioned, but all I can do is feel sad and discouraged. Not exactly what I thought my life would be.

xxxooo Hermit

Yes this happens to me all the time. Like today...mom and I went to Walmart to grocery shop. I sat in the electric scooter and she got a regular cart, I went in and went to the bathroom and came out and took the electric scooter back because I was afraid that I might see someone I know and they wouldn't understand my use of the electric scooter because on the outside I look fine. I did however, regret this decision because by the time we were done shopping my legs and feet hurt so bad! They still do! So I understand what you mean! I guess we will all have to adjust to this somehow. Good luck! M

well embarassed, is not the word. MY problem is even with my family I sort of have hid it for yrs. I pushed myself and tried to act normal. Now it is almost hard to hide it as it has gotten worse and my family has gotten used to be being "normal" so they expect it. I am not explaining it well at all. I guess its just now that I have faked it all these yrs. they don't realize how much I suffer in pain.

For instance its hard for me to cook a big dinner for family of 7-11. But when I say I don't want to have everyone over, my husband asks them for dinner anyways and it is happening more and more that he asks them, even when I ask him not to as its not a good day. So he REALLY doesn't understand how much pain I am in, exhausting and hard it is for me to do this because he doesn't listen to me. do I make sense? he'll say he will help, but the little he does isn't enough. Sometimes I want to scream!

But then it makes me mad to see older people out walking, running and enjoying life while I am on the inside looking out, missing out on life.

It makes perfect sense. I have CFS, not FM, but the ramifications are the same. I'm 57, live in a senior mobile home park, and see people 20 and 30 years older than me being active, walking, swimming etc. I'm one of the youngest ones here, but am among the most disabled. So I feel a little embarrassed sometimes because I look so healthy.

I'm lucky in that my immediate family - siblings - do accept this illness as real. They can hear it in my voice when I talk to them on the phone, it changes when I'm crashed, etc. but I know it took some of them a number of years to realize how real it was.

I rarely tell anyone new about CFS. They don't or can't understand, and it takes too much energy.


Mary

I play bridge, some weeks 2-3 times. I'm the Youngest at 70 with all these ladies who are in their 80's and 90's...and none of them deal with aches and pains that I do. And I'm the youngest.

I'm not embarrassed for a moment, it's just the way it is.

One 87 yr old is dealing with dreaded cancer and I wouldn't change lives with her for anything. I don't fight it. And keep trying to feel better. jam

Thank you for sharing your posts about FM and being embarrassed. I noticed a lot of you have mentioned that you are not really "embarrassed" but frustrated about this condition, that is so very true, the frustration, and for me the embarassment of this illness is overwhelming at times.

I noticed some of you have mentioned about the forgetfullness and difficulty we can get from just having a conversation with someone, forgetting what you were going to say, or having a hard time getting the words out, this is so true as well and can just add to the problems.

I felt this was a good post as well, and I was hoping that it didn't come across as negative, but this is really how I do feel about this condition. I know I cannot continue to be embarassed about this because in the end it doesn't do any of us any good, BUT I am happy that I can always express my feelings to you all, and you can do the same. BIG HUGS, Chelz.

Yes, I can relate. I feel like a completely different person some days, and I try not to be around people when 'the demon' of pain and disability set in. It seems completely out of my control and as much as I try to be positive or be active, I am unable to function at all. Like my body and mind just shut off. I have to isolate myself because it is impossible to explain this to a healthy person without being negatively judged.

My brother who has a mental illness once said he wished he could have spots or stripes or something to show the struggle. I agree. I'm tired and I hurt. I can't remember things I should. My fine, genius level mind is deteriorating!

My husband is convinced that I'd feel better if I'd lift weights! I finally told hm I go with him, but he hasn't gone yet, so I'm safe so far. I do try to get outdoors every day and walk or something. But when the temps are 100 and the humidity is 50%+, it is just killer to me!!

Gentle hugs to everyone!!!

I took this letter off of the FibromyalgiaTreatment.com website. It is a letter to normals to explain my illness. It is very good, and helps me not feel embarrassed by my illness.

LOVE LETTER TO NORMALS

by Claudia Marek

Here is my letter written to explain to family and friends what it's like to have fibromyalgia. It won't work miracles: it's hard to understand our illness from the outside looking in. But it is a start and can open the door to important dialogues. You are all welcome to use it, either as is, or as a basis for writing your own. Remember that you have a responsibility to tell those close to you what is wrong and communicate as clearly as you can how you feel and what you need. The best time to do that is when you are not upset!

Fibromyalgia isn't all in my head, and it isn't contagious. It doesn't turn into anything serious and nobody ever died from fibromyalgia thought they might have wished they could on really awful days. I can't control how often I feel good or how often I feel terrible. If you want to read articles or books about fibromyalgia I can show you some that I think are good. If you just want to learn as we go along, that's fine too. This is definitely going to be a process. The first step is for you to believe that there is an illness called fibromyalgia and that I have it. This may sound simple, but when you hear about my symptoms I don't want you to think I'm making this all up as I go along.

Fibromyalgia is a high maintenance condition with lots and lots of different kinds of symptoms. There's no way to just take a pill to make it go away, even for a little while. Sometimes a certain medication can make some of my symptoms more bearable. That's about the best I can hope for. Sometimes I can take a lot of medication and still not feel any better. That's just the way it goes. Lots of people have been cutting new drugs advertisements out of magazines for me and I appreciate the thought but I've seen them. Look at the list of side effects they have and the few symptoms they help in return. Even in the best studies these expensive compounds didn't help half the people who tried them. No matter how happy the people in the pictures look, there's still no miracle drug available.

There's no cure for fibromyalgia and it won't go away. If I am functioning normally, I am having a good day. This doesn't mean I'm getting better -- I suffer from chronic pain and fatigue for which there is no cure. I can have good days, weeks or even months. But a good morning can suddenly turn into a terrible afternoon. I get a feeling like someone has pulled out a plug and all my energy has just run out of my body. I might get more irritable before these flares, and suddenly get more sensitive to noise or just collapse from deadening fatigue. Weather changes can have a big effect on how I feel. Other times there may be no warning, I may just suddenly feel awful. I can't warn you when this is likely to happen because there isn't any way for me to know. Sometimes this is a real spoiler and I'm sorry. The sadness I feel for what my illness does to those around me is more than I can easily describe. You may remember me as a light-hearted fun loving person -- and it hurts me that I am no longer what I was.

Fibromyalgics have a different kind of pain that is hard to treat. It is not caused by inflammation like an injury. It is not a constant ache in one place like a broken bone. It moves around my body daily and hourly and changes in severity and type. Sometimes it is dull and sometimes it is cramping or prickly. Sometimes it's jabbing and excruciating. If Eskimos have a hundred words for snow, fibromyalgics should have a hundred words for pain. Sometimes I just hurt all over like I've been beaten up or run over by a truck. Sometimes I feel too tired to lift up my arm.

Besides pain I have muscle stiffness which is worse in the morning and evenings. Sometimes when I get up out of a chair I feel like I am ninety years old. I may ask you to help me up. I'm creaky and I'm klutzy. I trip over things no one can see, and I bump into the person I am walking with and I drop things and spill things because my fingers are stiff and my coordination is off. I just don't seem to connect the way I should. Hand-eye, foot-eye coordination, it's all off. I walk slowly up and down stairs because I'm stiff and I'm afraid I might fall. When there's no railing to hold on to, it's terrifying.

Because I feel bad most of the time I am always pushing myself, and sometimes I just push myself too hard. When I do this, I pay the price. Sometimes I can summon the strength to do something special but I will usually have to rest for a few days afterwards because my body can only make so much energy. I pay a big price for overdoing it, but sometimes I have to. I know it's hard for you to understand why I can do one thing and not another. It's important for you to believe me, and trust me about this. My limitations, like my pain and my other symptoms are invisible, but they are real.

Another symptom I have is problems with memory and concentration which is called fibrofog. Short-term memory is the worst! I am constantly looking for things which I have no idea where I put, I walk into rooms and have no idea why. Casualties are my keys which are always lost, my list of errands, which I write up and leave on the counter when I go out. Even if I put notes around to remind myself of important things, I'm still liable to forget them. Don't worry, this is normal for fibromyalgics. Most of us are frightened that we are getting Alzheimer's. New kinds of brain scans have actually documented differences in our brains.

I mentioned my sensitivities earlier and I need to talk about them again. It's more like an intolerance to everything. To noise, especially certain noises like the television or shrill noises. To smells like fish or some chemicals, or fragrances or perfume. I also have a problem with heat and cold. It sounds like I'm never happy but that isn't it. These things make me physically ill. They stress me out and make my pain worse and I get exhausted. Sometimes I just need to get away from something, I just don't know how to say it. I know that sometimes this means I will have to go outside, or out to the car, or home to sit alone and that's really all right. I don't want or need you to give up what's important to you. That would only make me feel worse. Sometimes when I feel lousy I just want to be by myself. When I'm like this there's nothing you can do to make me feel better, so it's just better to let me be.

I have problems sleeping. Sometimes I get really restless and wake up and can't get back to sleep. Other times I fall into bed and sleep for fourteen hours and still be tired. Some nights I'll toss and turn and not be able to sleep at all. Every little thing will keep me awake. I'm sure that's confusing to be around, and I know there are times when my tossing and turning and getting up and down to go to the bathroom disturbs you. We can talk about solutions to this.

All these symptoms and the chemical changes in my brain from pain and fatigue can make me depressed as you'd imagine. I get angry and frustrated and I have mood swings. Sometimes I know I'm being unreasonable but I can't admit it. Sometimes I just want to pull the covers over my head and stay in bed. These emotions are all very strong and powerful. I know this is a very hard thing about being with me. Every time you put up with me when I'm in one of my moods, secretly I'm grateful. I can't always admit it at the time, but I'm admitting it now. One thing I can tell you is it won't help to tell me I'm irrational. I know I am, but I can't help it when it's happening.

I have other symptoms like irritable bowel, muscle spasms and pelvic pain that will take their toll on our intimacies. Some of these symptoms are embarrassing and hard to talk about but I promise to try. I hope that you will have the patience to see me through these things. It's very hard for me too because I love you and I want to be with you, and it makes everything worse when you are upset and tired of dealing with all my problems. I have made a promise to myself and now I am making it to you: I will set aside time for us to be close. During that time we will not talk about my illness. We both need time to get away from its demands. Though I may not always show it I love you a million times more for standing by me. Having to slow down physically and having to get rid of unnecessary stresses will make our relationship stronger.

I'm new to the community and yours is the first posting I saw and, WOW, how appropriate. You're telling my story. Like all the others who have already responded, besides the unrelenting pain, the interaction with others is the hardest part.

I recently had a situation with my daughter-in-law, who I've had a terrific relationship with up to this point. We were planning a three hour drive with my son to visit with other relatives. She and my son regularly make the trip to visit with their cousins. Depending on how I'm feeling, I try to go along. Since I'd missed a few trips, I said that it's difficult because she tells me that my son feels like he has to apologize for my absence (because the rest of the family doesn't get it). I said, "It might be nice if you were more supportive instead of making me feel like I'm lazy or faking". This was truly said in the kindest way. From that I got, "Well, your son has already had to lose his Mom being active and it gets really old"
?????????????!!!!!!!!!!!!!!!!!!! Now, mind you, she and I have been extremely close. This was
February and she hasn't spoken to me since.

I hate my health having to always be an issue. Like you, sometimes I just want to be alone to "suffer in silence".

I pray that you feel better and know that you are definitely not alone.

Good night and God Bless...

I completely understand about doing something in your past! Whenever I'm brave enough to actually speak about the list of ills (on top of the FM, I just found out that I have a slipped disc, and two vertebraes that are rubbing on one another, an elbow that needs surgery, a knee replacement in the wings and neck surgery that went wrong...) I only list this to explain why I tell all my friends that I believe I was a gladiator killing Christians in my last life to deserve this one!!! LOL

It IS awful to feel that we're just marking time, gritting our teeth and getting through the day while we watch others live their lives. It's terrible to have to feel embarrassed about something that we have no control over. The only thing that we can hang onto is knowing that we'll get a heck of lot of "bonus round" points the next go around!!!

I like to think of all of us as a "special tribe" of God's special people. I believe that as terrible as our experiences can be, we surely develop a lot more compassion and character than those who have it easy!

Take care and know that you're not alone. God Bless...

I was in walmart tonight I know better then to go out of the house but I just had to, so I got some food and as I was pushing the cart my right foot cramped real bad almost took me to the ground then my back felt as if had locked up

I had to have my son bring me a pain pill sit there like a dumbie and wait till I could go home ,I feel like a duck out of water evertime I go to the store because I walk so slow.

I was embarrest for my children standing there till they could go home I finally got dinner on at 11:00 not fair it is starting to embarrass me, am I'm aving a hard time dealing with this new stage almost in a wheel chair.

Hi,

Not so much embarrassed as frustrated. You are right. Some people just don't get it. I am lucky that my family "understands" even if they don't always get it. They watched my health change literally in a few wks. so they know it is real.

Continue to try to educate people, but first and foremost take care of yourself and your needs! I am pretty verbal w/ family when I am flaring and in a bad place. At work I have to try and be ok, but I have learned if I am tired I let them know and I take care of me as much as I can.

You are not alone and a lot of us do understand exactly how you are feeling.

JP

Wow! I have been dealing with fibro for over 9 yrs. and I print stuff out all the time to try and educate people, but your letter is fantastic! It hits on everything. I will be copying it and sending it to my niece who was just dx'ed a couple wks. ago. This will be a great tool for her to share and to help her understand as well.

Thanks again.

JP