Friday, March 28, 2008

But you don't look sick?

"Oh honey, you can't be sick. You look too good." "I get pain too. You just have to fight through it." "Stop being so dramatic. It can't hurt that bad." "If you just lost weight, you'd feel fine." "Maybe you're just getting your period."

These are some of the 'well meaning' and 'well intentioned' comments I've gotten from people when I've told them that I have Fibromyalgia. I know that I am not alone in this. However, it just burns me. People with Fibromyalgia, Chronic Fatigue Syndrome and a host of other illnesses including hairing impairments, other autoimmune conditions and much more, have to deal with this seemingly helpful and kind sort of backhanded compliment.

I can be in pain and not look like it. I may look too good to be sick, but what's that really supposed to mean? Should I stop caring about brushing my hair and everything because I'm sick? There are some days that I can't do that, but no one says to me then..."my, you must have fibromyalgia!" They just think I was too lazy to care. I also don't wear make-up anymore because most of it just really aggravates my skin and perfume - fuggedaboutit. It's impossible for me to handle with all of my chemical sensitivities.

Unfortunately, if I tell people that, then I get the strange looks and the cocked-eyebrows. You know the ones. They make you feel like you're crazy. It just couldn't possibly be like that. "You're too sensitive!" Hell yes, I am. Fibromyalgia is a disease of sensitivity in many respects. However, it's my truth and I would like people to give me a chance to explain myself.

Boy, do I sound cranky? Maybe, I am getting my period (lol!).

Eleanor Roosevelt said it best, "No one can make you feel inferior without your consent." The longer I've had this disease, the more I realize how true that statement is. However, I don't think it's too much to ask to have people tell me I'm not sick and that my disability isn't real just because it doesn't look like it to them.

I had a woman crying on my couch just yesterday. She talked to me of her pain and her shame with her invisible disabilities. Her husband doesn't believe how sick she is; she had to struggle to get social security and now, she may lose her meager benefits. My neighbor has Lupus. Because she 'doesn't look sick', other neighbors get mad at her when she parks in the handicapped spots; even though she has a sticker!

Those things outrage me. Of course, if I told you my biggest pet peeve, which was --- we have about oh 5-10 pills for erectile dysfunction and impotence, but none that work for many invisible and visible diseases-- you'd laugh, of course. However, that's a story for another article!!!


10 comments:

imgr8phil said...

I hope thiese people who downplay your medical problems don't have a similar fate befall them someday.  Hope you have a good weekend.  Take care.

Phil

lanurseprn said...

My best friend Joey has a host of illnesses including Cancer....but he doesn't look like it. Even his Doc's question whether he should be on disability or not sometimes. It's frustrating for him, too.
Pam

nelishianatl said...

I have heard this since the beginning of my own compromised immune illness.  You wrote this so well.  You are singing my song.  Tell it like it is, sister!

I am glad you wrote this piece so well.


NELISHIA
http://journals.aol.com/nelishianatl/PRAYINGANDBELIEVING/

cuteallison1980 said...

People just don't understand that pain is chronic and you don't have to look sick to be sick.  Hope you do your best to have a happy weekend Lisa.  Luv ya!

Allison

swmpgrly said...

Maybe if they could walk in your shoes for one week they could understand.

specialadyfink said...

I have chronic pain-I don't talk about it-why bother.yeah I do things I have been told by Doctors  NOT TO. like ride my 4 wheelers.But-ya know what I sold my horses because  I got three badly crushed discs from a fall and they said I couldn't ride anymore-they were the love of my life-then when my son brought by his raptor -I said hell yeah-I wanna leran to ride it-if it kills me then I had fun doing it......I have severe arthritis.....I have a hearing problem,now it seems I have a sight problem starting as well--I get horrible migrains....these things can't be 'SEEN' and I am sure (most of the time) I don't look 'sick' but I know what my problems are =I know what my limits are-I know my pain...and I'll be dammned if I'll let someone tell me I don't hurt or 'look' as though I have problems.They can kiss my LOYAL-ROYAL & SPOILED BEHIND!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
GOTTA GET YA SOME 'TUDE'
CONNIE

gehi6 said...

I think everyone with one of these conditions that even doctors have trouble diagnosing and believing in has experienced the callous attitudes of those who don't believe they are really sick, they want to be sick, because they don't want to work.  I have certainly heard my share during periods of time when I would be worried about dying.  I have been told my ailment was all in my head, that tests showed nothing, therefore it had to be unreal, as though a test had been invented for every conditioin.  As though the patient's perception of his or her pain had no validiity.  I even had someone tell me it was too bad I had not had polio and was in a wheelchair likes her mom so I wouldn't have so much trouble trying to prove disability.  If you can't walk you are disabled whether it was because of polio or not.  So I greatly relate to those with similar diseases, knowing what they are likely to be going through.  I feel that these people given time will adjust to their condition and will do the best they can without being chastized and criticized.  I just try to be sympathetic as they work through all their issues with the changing face of their ailments.  I don't try to tell them what they feel.  I just try to listen to them tell me about their disease and what it is doing to them.  This is a time when i think listening is very important!  Gerry

ajquinn354 said...

Unless someone is going through similar health issues like you and anyone having any health problems do, they don't understand or won't allow theirselves to understand....some people just have to be able to see an illness to see the light. Just say  with a smile "I hope you never have to experience what I go through and the insentivity of people who feel they have to judge others all the time" and keep walking.  Maybe all of you who have these types of health problems and have to live with them daily will make the insensitive stop and think.....but, don't count on it. LOL.  Arlene (AJ)

chat2missie said...

We have the same issues with Brandon.  Because he looks good at the moment, people don't believe he has a serious medical condition with pain on a daily basis.
Missie

heavenlybama said...

I can definitely relate Lisa.  I have a handicap sticker.  I only use it on my bad painful days.  Otherwise, I don't because I know there is someone else out there who is worse off or may be having a more painful day than myself.  I don't look sick but all my problems are internal.  You can't see them.  Just because people can't see them doesn't mean I don't have it.  I was even accused by my SIL back in April that I made my medical problems up and that I was doing illegal drugs!  She accused me because I called her 19 yr. old daughter out on something that she did to make herself look bad to the whole family.  Just to shut her up, I offered her evidence on paper.  Ya know what?  She wouldn't even look at the paperwork because she really knew it was true.  Den doesn't look sick with kidney failure because you can't see it but he is.  There are times I do things my drs. have told me not to do like lifting heavy objects but between my Dad, myself, and Den (none of shouldn't be lifting heavy things) I do it cuz Den has been thru 500 surgeries in the last 40 yrs. and my Dad is elderly.  This subject is my biggest pet peeve.
Hugs,
D