LisaS
Frequent Contributor (1K+ posts)
Member # 10581
posted
i just read a post from Scoops and it made me so mad. The ID dr told her that she didn't "look" sick? How many times have we heard that? I heard it three times last week at three different appointments.
When will be be judged on what we SAY, and not on how we LOOK?
Don't they think we actually get up and shower and try to look halfway decent before an appointment? At home I live in sweats and in bed. Ponytail and no make up.
I wish we could do a study on the same person walking into an ER to see how we got treated differently, if we were dressed up and wearing make up, or for men neatly shaved and dressed nice, as opposed to walking in unshowered, hair amess, no make up. I's like to see how much they base on looks and not our symptoms.
My LLMD had to turn me over to my GP because of elevated liver enzymes that weren't dropping.
Even though he keeps telling me to come in for a follow up appointment every few weeks to run the labs for my liver,,,,he tells me how I "Don't look sick, and throws in a few "you look good"!
I said," I'm here for the FOLLOW UP appt that you requested for my liver enzymes!" I wanted to add "I'm not here for a date"
He's the same dr that found all of my brain lesions and knows that my liver enzymes were recently at 456....so, I guess you CAN look OK and still have PROBLEMS! Shouldn't they know that??
The same day of my last appointment, I watched Montel on Oprah and caught myself thinking how "good" he looked..lol It was only when he would break down and cry that I thought about all that he has been through and how he has good and really bad days.
I guarantee that if I broke down during my Dr's appt., I wouldn't get ANY sympathy. I would probably get offered some antidepressants, though!
I have another "follow up" next week, should I walk in w/o washing my hair or putting on makeup and see what happens???
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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soonermom,
Is there another way to get those blood tests? Would someone in your local lyme support group know of another lyme friendly doctor - or could your LLMD just order the labs for you and you go to a clinic nurse ?
I have a lot of links and articles about the liver and supplements that can help the enzymes. Are you taking liver support supplements?
Milk thistle is just one. NAC may be better and there are dozens of options. Let me know by PM if you might want some of what I've gathered about that.
posted
My PCP treats me the same way.I have been seeing him for years and he is actually an ID doctor. The reason why I stopped seeing him is because all he did was change my anitdepress & anxiety meds. Then told me when I was in pain that Our minds can make us feel pain , lets "increase the dosage" But you look great!
Now , I hate this because when i go a doctor I usually goes during work or after. I am always dressed up. Should this even make a difference??
I am blond to does that mean I am dumb?
Posts: 34 | From Hazlet New Jersey | Registered: Apr 2009
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posted
I hate this too!! When someone says that to me I say "Oh yeah, well I feel like sh*t!"
I am not sure what a sick person is suppose to look like? But I have seen people who have cancer and other then hair loss some of the them look ok too.
Oh and I don't wear makeup or do my hair unless I have an event to go to. So I don't know how much worse I can look when I go to the doctors. LOL
-------------------- My lyme disease blog: http://lymetimes3.blogspot.com/ One BIG Lyme family! I tested CDC + 10/08 My mom Igenex + 11/08 & My brother Igenex + 4/09, My 2 boys some + & IND bands, clinical diagnosis 3/09 (youngest has Aspergers too) Posts: 470 | From Painesville, Ohio | Registered: Mar 2009
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LisaS
Frequent Contributor (1K+ posts)
Member # 10581
posted
When someone tells me I look good, I always say, I'm glad I don't look how I feel cuz I feel like crap!
I think this should be over soon, I was at 225 last time and it will be 3 weeks (7 weeks off abx) when I retest again. I am on the NAC, ALA, and milk thistle. IF it doesn't fall considerably, I will get that info from you.
Since my LLMD told me to follow up with my GP, I should probably wait until I am under 100 before I call his office back. He did do his job and had ordered an ultrasound of my liver and many more blood tests to make sure there wasn't something else going on.
I do think that he was giving me some psychological testing by the questions that he started asking me. Scoops, that comment reminds me of the Cymbalta commercial that makes me cringe every time I see it! DEPRESSION HURTS!! UGHHH...I hate that.
How about an antibiotic commercial that says LYME HURTS!!! lol (I have started getting "fibro" like pain daily since having to stop abx.)
LisaS
Frequent Contributor (1K+ posts)
Member # 10581
posted
I just thought of another thing that was irritating. I have a friend, and he is totally awesome, calling Drs trying to find out more about lyme disease and the controversy behind it... so I know he did NOT mean this in a bad way at all. But, usually I am bedbound. Lately I have been able to get up and move around the house, enough to be able to go on the computer. Stuff like that. But anyways, he came over and I was up making a bagel, and he said, it's great to see you up and around. At least your not bedbound anymore!
I know he meant it in the nicest way, but it actually makes me scared to ever try to sit in the front yard, or if I have a good day try to go into a walmart or anything like that. People see you doing something and assume you are NORMAL again.
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
I just tell people: Of course I look great, it's just unfortunate I'm spending thousands of dollars on doctors so I can "feel" great to. God knows I love spending my lifesavings on medical treatment and burdening my family, the government, and my girlfriend. So yeah, I look great, don't I?
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
My sister finally started dressing and looking like she did at home when she went to the doctor. She said his attitude did change and he was more helpful with her disability issues.
It goes against my nature to be seen in public looking as awful as I do at home but maybe that's what we need to do.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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Leelee
Frequent Contributor (1K+ posts)
Member # 19112
posted
I get it all the time too. My PCP always says "you don't look 52". It makes me crazy angry.
Or people say I have lost so much weight and I look great. As if I was overweight in the first place (which I wasn't). It's not a compliment at all. It's personal and I am sick and that's why I am skinny.
-------------------- The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr Posts: 1573 | From Maryland | Registered: Feb 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Realize that some doctors will think less attention to grooming indicates depression. It can backfire.
My bottom line is that I try to groom but certainly styling hair and make-up are gone (due also to chemicals, not just fatigue). It's as easy to put on fresh clothes as worn one (and with cotton knit, I never iron).
If you have a doctor whom you are trying to show how sick you feel, dump that doctor. I think anytime we try to convince them of the truth it is impossible.
I dress not for fashion but for freshness and comfort because it feels better. Dress for yourself and no one else.
posted
Since one of my symtoms is unexplained weight loss. If it is someone who has not seen me in a while they will say "wow you look great" meaning you lost all of that pregnancy weight.
If it is someone I see all of the time , they say "you are getting way too skinny , with a face"
As if I have ANY control over it!
When the Rummy prescribed the Prendsione for the allergic reaction I said I prefer not to go on the steriods. He said oh , because of weight gain? as if I am that vain? I said NO because of the side effects.
It feels great to vent!
Posts: 34 | From Hazlet New Jersey | Registered: Apr 2009
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LisaS
Frequent Contributor (1K+ posts)
Member # 10581
posted
Scoops, my physical therapist has/had lyme. But besides headaches is better but referred me to the doctor that treated her. This was the Dr that wanted me to do the steroid shots for my shoulder. When I told her no, she said don't worry not much of it gets absorbed, I said well, good then, I don't want it, what good will it do even if you don't have lyme if it doesn't get absorbed?
And the phy ther with lyme, was the one who tried to get me to do elect stim, but she was understanding when I told her no. I told her I could print out some info that says why not get that when you have lyme (from Dr B's book) but she said no that's ok. You'd think if she has lyme she'd want to know all about it. If not for her, for the patients she treats.
Leelee
Frequent Contributor (1K+ posts)
Member # 19112
posted
Very interesting what you said Keebler, about dressing for a doctor's appointment.
Before my first LLMD visit I almost posted a question on what to wear so that I would be taken seriously. I need not have worried, as he is a great doctor, but after so many years of being shrugged off by the medical community, one can't help but wonder if subtle clues don't make a difference.
I no longer wear my beautiful engagement and wedding rings now that I am so scatter-brained and am afraid of losing them, but I always wonder if jewelry doesn't send some kind of a message to unscrupulous doctors too.
-------------------- The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr Posts: 1573 | From Maryland | Registered: Feb 2009
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feelfit
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Member # 12770
posted
I get iti all of the time too. In my previous life I was in top physical form. Some has held. I haven't worked out in over a year and my new hairdresser asked me "how I stay so buff"
I am a bag of mush. I am told daily " to look at you you would never know anything was wrong with you, you look great"!
I am so SICK of hearing this. It almost guilts me in to PROVING that I am sick.
All they need to do is videotape me around the house in my grubbies with my tube sock tied around my head to see how beautiful this lyme life really is.
GRRRRRRRR!
Thanks for the vent thread.
Posts: 3975 | From usa | Registered: Aug 2007
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Starfall1969
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Member # 17353
posted
Scoops, I know what you mean about the weight loss comments.
I lost 35 pounds so far, and I have had so many people come up to me and comment how I look great after losing all the baby weight; what's my secret?
When I tell them I've been sick, they give me the "You don't look sick."
And I tell them that's how it often is with Lyme DIsease--it doesn't attack your looks.
What do I have to do to make you believe I'm sick--get leprosy?
Oh, and a lot of those comments come from people at church--the one place I go where, yes, I put on makeup and a nice outfit and try to look half decent.
Posts: 1682 | From Dillsburg, PA | Registered: Sep 2008
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posted
I look good too, but when I can't come to work, looking good doesn't help me keep my job any. When I am trying to read or do research, looking good doesn't help me retain the information any!
And, I go to the doctors office looking just like I do at home. I even asked my husband once, well, I am going to the doctor and I actually feel like putting on make up. Do you think they will tell me, I don't look sick??
We should have to worry about all that crap!!!
Shalome
Posts: 893 | From Florida | Registered: Dec 2008
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bettyg
Unregistered
posted
from what i wrote up for my local newspaper story 5 years ago and published in newspaper ....
``You look perfectly healthy...not sick'' said one of my family members/friends. Oh what they don't know and can NOT feel of the pain and fatigue inside me!
If I were in a wheelchair, used crutches, a walker, or a cane...I would have a visible disability impairment. As our illness progresses, we use the aids I mentioned.
``It's all in her head'' my siblings/others say. Only those of you going through what we fibro folks have will know how much pain and anger you cause us with your thoughtless comment on our ``invisible'' illness!
We don't need people like you pulling us down; we keep company with positive supportive people only!
We don't want sympathy; we only want your support, compassion, and someone to talk to when our ``flare-ups'' are really bad...that's all.
I have been blessed with my full-time supporter, my husband, and other close friends/online friends.
I have had chronic fatigue syndrome, CFS, since age 21 after getting a case of mononucleosis; and still have it 34 years later. I was diagnosed with fibromyalgia syndrome, FMS or fibro, 11 years ago but go back at least 30 years with that too.
***********
otherwise when the say i look good, i tell them i'm a 24/7 construction zone inside!!
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They told me I looked great for the first ten or so years. They don't tell me that now. I am a wreck. It shows.
Posts: 845 | From Eastern USA | Registered: Jul 2006
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posted
Hmm... It's so strange that people would gripe about compliments.
I LOVE it when someone says I look great. Mostly, because the people I see most often have seen me at my worst.
The only time my normal, pink cheeked, smiley face poses a problem is when there is something going on... I'd had bilateral pulmonary embolus last year, and while driving felt dizzy and weak. I had to call 911 and the fire department came to my rescue. They all mentioned that I looked fine, but my O2 sat was 88% - not fine... I'm known as a compensator, and unless I tell you what's going on and you believe me, people would never really guess that I'm sick.
[ 04-03-2009, 08:33 PM: Message edited by: AP ]
-------------------- Sometimes when I say �Oh, I�m fine� I want someone to look me in the eyes & say �tell the truth�
randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
i always tell them "would you like to trade places and walk in my shoes for just a day?"
if that doesn't work, i just ask "would you like me to be screaming in pain on the floor maybe? or have a bone sticking out of my body so you can see something?"
i can't help it, that hacks me off.....
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
the inside of my nose feels raw and sunburn all the time.
I have chronic vertigo, can people see this?
Im totally sick of this!
Posts: 2905 | From New England | Registered: Sep 2004
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posted
This is happening to my 12 year old all the time.
Her original pediatrician kept saying that every time he would see her, and then would proceed to escort me privately to his office to suggest we get her on antidepressants asap, since she must be bipolar!
We continuously told him that she hasn't been depressed at all during any of this nightmare except for the fact that she wants the pain to go away and that none of the professionals believe her.
She is now seeing a LLMD who believes her!
With her head pain and fatigue, she hasn't been able to go out much, but the few times she has and has seen friends that know she is sick, they all say very suspiciously, "You don't look sick." Acting as if she is trying to get attention or something! Boy do I wish that was all it was!
This is so frustrating to her because yeah the only reason she is out that day is because she is having a good day. They don't see her the other 29 days of the month!
She was so angry the last time she was able to see some friends and they made that comment that she replied: "Well, do I need to be in the hospital before you will believe me?!"
It is very sad that a child who is sick and finally feeling up to going out for the day to see friends has to then expend her energy defending herself--of course her wanting to go out now is getting less and less because of these stupid comments.
The ignorance regarding Lyme and co. is huge, and the resulting loneliness and abandonment are yet more symptoms of this disease.
All we can do is try to enlighten as many people as possible along the way.
Posts: 648 | From northeast | Registered: Feb 2009
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posted
Sometimes I say something to the effect of: think about when you're in a hospital. You can't always see what is wrong with someone, and yet they've usualy got something medically wrong.
Posts: 13117 | From San Francisco | Registered: May 2006
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LisaS
Frequent Contributor (1K+ posts)
Member # 10581
posted
Sorry Mom with Hope, I can't imagine what children go through. Give her a big hug from me and tell her I understand and believe her! Poor girl!
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