Sick of people saying " Well you look fine, you would never know" (and off work)

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Lyndsey

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DX FIBRO
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Sick of people saying " Well you look fine, you would never know" (and off work)

Ok, so I guess this is more a vent type post.....Anyone else out there feel major frustration when people say " wow you look great, your really feeling that bad eh?" Not that it is a bad thing to look ok, I mean I would rather look ok than look how I actually feel. But man, I find it frustrating and almost like people don't believe me or something. Sometimes I look at myself and think I look like complete SH#@! I guess it is because that is how I feel 99 percent of the time. I find these comments especially hard when they come from my old co workers that I see for coffee now and again.

I find that these comments, though probably meant in the most sincere way, make me feel like people think I am lying (this bothers alot and wish people could see it sometimes so hard having an invisible illness, I know I am preaching to the choir lol). It could also be my paranoia which I am notorious for. Constantly worrying about the thoughts of others, a nasty trait that I have always had.

Guess I'm just looking to relate with some people. I feel bad enough as it is being off work... Can't get rid of that feeling no matter how hard I try. Ive been off work about 9 months now and that feeling doesn't go away, but I know that with the severity of my symptoms I couldn't work right now the way I was before. It got to a point I just couldn't take it anymore. Sometimes it makes me feel like such a weak person that I am unable to work right now. Anyone else go from being a very motivated hard working person, to this....Not working.

Continuing to go to church every week which is really helpful, although I find that once I leave church that uplifting feeling is gone the second I get home. Wish I could find a way to feel positive and worry less of the time.

I am sorry for those of you who have read a couple of my other posts if I sound like a broken record!

Hope everyone is doing ok tonight

Thoughts and prayers with everyone

Lynds
 

Loftpat

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ME
Re: Sick of people saying " Well you look fine, you would never know" (and off work)

Oh yeah, that was me. On the go, visible and high stakes position, hiking and otherwise exercising to the max during time off. I think a whole bunch of us here were overachievers. It IS hard to go from that to barely managing to get thru a day. There are few people in my life who truly understand, but I feel blessed for those who do. I never bring up fibro or how I'm feeling to anyone but those people. When others tell me I'm looking good, I usually reply, "Yes, I'm having a good day today." I totally understand about feeling badly about work. I struggle with that almost everyday. Guess I'm still morning the old me. Slowly I am learning to find new things that I can do that bring joy. That helps a lot. Hugs.
 

cmetryme

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TX
Re: Sick of people saying " Well you look fine, you would never know" (and off work)

Sometimes venting is all you can do. You know you are loved by your friends and family.
Then they say you look good is them trying to show they love you for you and not
The pain they can't see. I understand about not working. Once I was diagnosed with
Skin lupus I couldn't work in my field anymore.
This was due to the florescent lighting I used to be under
For 12-18 hours a day. I've even try to think of work I can
Do that is not under the lights or outside or has electrical
Cords attached knowing I can never do it.

Hang in there and keep venting, it helps all of us.
 

nascarmike

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06/2013
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rhode island
Re: Sick of people saying " Well you look fine, you would never know" (and off work)

Yep been there, told that. People who do not go through this just can't relate to it no matter how well intentioned. Try not to let it get to you. I'm constantly looking for healthy ways to redirect my mind off the pain but some days just plain SUCK. Good luck and I wish you the best...Mike
 

laineyk56

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Dec 15, 2014
Messages
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DX FIBRO
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05/2013
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US
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NY
Re: Sick of people saying " Well you look fine, you would never know" (and off work)

Lyndsey, You are not alone. My gosh when you made the comment of church I thought "THATS ME"!..

I have IBS and anxiety I have not been able to work since Dec 2012. I am a nurse and I just could not hold it together any longer.

I also am probably older then most here (just turned 56) I applied for Disability and was turned down 1st try, just had a hearing in front of judge on Tuesday and have to wait weeks for that verdict. Lawyer says you keep appealing until they give in.

so good luck on your journey.

Everyone who sees me (especially ppl who have not seen me in awhile) say "YOU LOOK GREAT!, you lost so uch weight, etc"

I lost 55 lbs due to H-pylori too...Never been this sick in my entire life.

I am also withdrawing from valium and that adds to the mental/physical pain.

Basically I am a mess, but oh do I LOOK GOOD...not

so just wanted you to know that without God I probably would have jumped a cliff by now
 

1sweed

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Feb 4, 2013
Messages
1,956
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DX FIBRO
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01/1995
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PA
Re: Sick of people saying " Well you look fine, you would never know" (and off work)

Lyndsey,
I went through this same thing mentally beating myself up every time someone told me how great I looked, or you don't deserve your disability go out and get a job. Family has been the hardest on me saying often you don't know what life is like, when you get a full time job let me know. My heart has been broken many times with these types of comments.
I am now helping my mother who needs full time care and although family does not help I am still considered to be a burden and need to get a job. Before I got fibro bad I was working everyday with my business of housecleaning. I worked until my arms and legs refused to work anymore. It took me seven years to get my disability. But no one sees my pain and fatigue.

I finally went to a mental health therapist and had counseling to get rid of that feeling of worthlessness and lost of not being able to work. I had regular therapy, as well as, a type of therapy called EMDR which you can do a web search for. It is a amazing therapy tool and can help refresh your mental state and outlook on life. I would say to anyone that is going through this problem of dealing with unbelieving friends and family to seek counseling of some sort.
If you have no money go to a government run mental health as they usually go on a sliding scale income, thus if you have no income or very little, your visit could cost as little as five to seven dollars, compared to $40-200, at other places. If you have insurance that would pay for it pick a better therapist that you like.

It is important to pick someone you can trust as you will be sharing personal thoughts and feelings. Also this person can be a important part of your team in trying to get your disability It is never a crime or crazy to seek help mentally or physically, when the need is there. While people still give me grief about working the hurt is less then before I learned the ways to cope with negative feels and be strong and have courage in face each new day. Good luck to all of you with this feeling and know I will be praying for each and everyone of you. :)
 

terbaer

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Apr 3, 2014
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WA
Re: Sick of people saying " Well you look fine, you would never know" (and off work)

Lyndsey, don't ever feel bad "venting" or complaining on this site. That's what we're here for. I usually say to those that tell me I look great, "Thanks! I'm having a pretty good day today!", very cheery. Or, if I feel like poo, I will usually say, "Thank you. I wish I felt better than I apparently look." If someone asks me how I'm feeling, it's usually, "I'm fine" if it's someone I don't want to share with.

I agree with 1Sweed that counseling is definitely important in grieving the loss of who we were and accepting who we are today. My counselor was incredible and compassionate. She brought me out of a very dark and scary time of my life. She was also one of the medical professionals that wrote letters for me to provide to Social Security. When I met with SSD's psychologist, he said, "Your counselor thinks very, very highly of you." I think that helped me. I just found out that I was approved for SSD. I truly believe having the counselor was a helpful piece of my historical medical documentation.

Good luck and hang in there. You will have better days and find coping skills to help you deal with these kinds of issues. Gentle hugs....
 

Lyndsey

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Dec 18, 2014
Messages
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DX FIBRO
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04/2014
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British Columbia
Re: Sick of people saying " Well you look fine, you would never know" (and off work)

thank you everyone for your posts It truely does help me alot. And Lainey good luck and I will be saying prayers for your hearing and that you get approved. Also prayers out to all of you .

xo

Lyndsey
 

EPleiades

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Feb 13, 2015
Messages
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Reason
DX FIBRO
Diagnosis
08/2014
Country
CA
State
BC
Re: Sick of people saying " Well you look fine, you would never know" (and off work)

Hi Lyndsey,

I can very much relate and feel mutual to you. I do look exhausted alot however, due to oft severe sleep difficulty (some nights worse than others) as you may see what time I'm in response to you. You are the first I have messaged - in response to your expression I so relate to.

I just joined in the wee hours of this morning! Keeping it short however for now, as I'm going to give it a try to get what rest I can -
my body clock is way way way off with this combined syndrome I/We all suffer. Glad to meet you here, and look forward to more very soon
with yourself and others via this network (glad I have found something in terms of support for the interim of this ongoing journey of unique challenge)

A support network gives a sense of strength through those times of need (when others just don't get it) ttys! :)

To all - treat ourselves well for Valentines!:!:
 

terbaer

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Joined
Apr 3, 2014
Messages
430
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DX FIBRO
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WA
Re: Sick of people saying " Well you look fine, you would never know" (and off work)

EPeiades, since this is your first post, I want to say welcome. Happy Valentine's Day! As you can see from my post, I too have difficulty sleeping. Insomnia sucks! Pain while trying to sleep sucks too! That felt good :)

I hope you find this forum as helpful as I have. I'm beginning to feel connected to more and more who post and provide support or need to vent. It's a great therapeutic way of helping us feel not so alone and validates all the quirky things our bodies do. Other than my 26 year old son who won't have anything to do with me because of this illness, I am fortunate to have a good support system with most of my family and a few select friends. Some don't have any support. I didn't want to get completely off topic with Lyndsey's issues, but I'm sure she would agree it's worthwhile to stop and acknowledge a new member. Take care....

Happy Valentine's Day everyone! I hope you have a good day today. It's supposed to be nice here. I'm hoping to get outside again today to spend a few minutes with my goofy horse, or as my husband says the dorse. :) <3
 

Lyndsey

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Joined
Dec 18, 2014
Messages
89
Reason
DX FIBRO
Diagnosis
04/2014
Country
CA
State
British Columbia
Re: Sick of people saying " Well you look fine, you would never know" (and off work)

Hi EPeiades, just wanted to say welcome as well :) everytime someone posts I feel less and less alone. I think this support network is one of the best things that has happened to me in awhile and is really helping me to cope even if it is just a little bit.

Speaking of insomnia, I am currently sitting in bed dreading the thought of trying to go to sleep. Not only from the pain, but mostly my mind. The racing thoughts, the racing heart rate, the anxiety just spiraling out of control every single night. Usually it takes me 3 to 4 hours to acctually fall asleep and at that point I have drugged myself. Its such a horrible feeling no matter how exhausted I am (which is always) this happens everynight. I have tried ativan and even that doesnt help that much. Then when I take it I get anxiety that something will happen to me as I am on oxycodone and worry about the combination. I always feel myself getting more and more worked up at night. Ive tried mantras, meditaton everything lol.

I need to figure out a way to resolve this or I may lose my mind. It makes the fibro that much worse with the lack of sleep.

Hope everyone had a lovely valentines day hugs to you all, and hope you are having one of your good days today.

Lyndsey
 

chez

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Joined
Feb 15, 2015
Messages
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DX FIBRO
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10/1997
Country
UK
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Dorset
Re: Sick of people saying " Well you look fine, you would never know" (and off work)

Hi. I am Cheryl from UK. I have read your posts & I have all the same problems. My back & ribs at this moment feel like they are caving in, it hurts to breathe & I am so tired of feeling so ill all the time. it is truly nice to say "oh I'm having a good day" they come rarely. I do hope I can be part of this forum without being judged as we all are with the non feeling people who really do not understand our pain. thank you. x
 

Osagboro54

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Jan 31, 2015
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Undiagnosed
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West Midlands
Re: Sick of people saying " Well you look fine, you would never know" (and off work)

Lyndsey I feel your pain. Being unemployed after working all my life effected me badly. Guilt, paranoia,
depression, the realisation that you can no longer do what you used to be able to do effortlessly. I also
have sleep apnea so lack of sleep makes the pain worse. Learning to accept it while continuing to research
alternative treatments. I am thankful for this forum... &#55357;&#56842;
 

EPleiades

New member
Joined
Feb 13, 2015
Messages
2
Reason
DX FIBRO
Diagnosis
08/2014
Country
CA
State
BC
Re: Sick of people saying " Well you look fine, you would never know" (and off work)

Hi everyone!
Thank you for the welcomes as well! I hope all connected here has had a loving weekend to yourselves and loved ones!
Has anyone been taking mats, pillows thick towels or folded 'soft' throws with them into public places (doctors office, restaurants,
Coffee shops,libraries, etc) in case all the cushie seats are taken and all that's left are either hard wood or plastic, fibreglass ones?
Awkward or what! & just something else to end up carrying!

Lyndsey, have you found any local groups (to go in person) out of New West ? I've just started at looking
but haven't spotted anything Yet other than finding it via a forum (which is really great).

well I will continue to hope and pray for a better nights sleep and wish you all the same!

Take good care out there 😉 EP
 

Vellybean

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Joined
Jan 23, 2015
Messages
48
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DX FIBRO
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09/1993
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US
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WI
Re: Sick of people saying " Well you look fine, you would never know" (and off work)

Lynds,

You bet it is frustrating when people say that! People tell me a lot I am always so happy! I want to smack the crap out of them because I am NOT happy but I just don't see the point in being a grumpy gus. I mean who the heck wants to be around someone who is in chronic pain and whines all the time. I always tell people, the better I look, the worse I feel. This is true for me. Except at home where I look and feel like crap most of the time.

My close friends and husband understand that I can't do a lot but other people do not. Even my mother-in-law doesn't get it. My own brother has told me "Just get over it and carry on." Talk about if murder was legal who would be dead lol.

I too do not work. I use to teach and had to quit as it was too much. At times, I feel guilty but not as much as I use to. I have stopped saying "You should" to myself and that has helped me. I treat myself now how I would treat others if they had what I have. Be kind to yourself hon!
 
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