View Poll Results: Have you explained that you're ill and someone reponded: "You don't look sick."?
Yes 172 90.53%
No 18 9.47%
Voters: 190. You may not vote on this poll

04-09-2008, 12:34 AM   #1
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Colt's Avatar
Join Date: Mar 2008
You don't look sick.

I have a feeling this one's going to be a landslide.
04-09-2008, 12:43 AM   #2
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Join Date: Jan 2008
I have a feeling your prediction will be correct.

Vote 1 for yay.

-diagnosed with Crohn's Disease in Sept. 2006, currently 28 years old

"Chuck Norris can kill two stones with one bird."

"Men with Spartan lives, simple in their creature comforts, if only to allow for the complexity of their passions." -The X-Files, S4
04-09-2008, 04:43 AM   #3
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Join Date: Oct 2007
voted yes.

this happens all the time, & has its benefits and drawbacks. on the plus side, i dont feel so bad facing the world when i push myself to go 'out there' because i dont look as bad as i feel. on the negative side - i think we dont always get the help & understanding we should, simply because this can be an invisible illness to others.
04-09-2008, 04:41 PM   #4
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Location: Halifax, NS, Canada

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Yeah, I just wish I could control my sphincter muscle suffiently/adequately/reliably so I could bracket my response with some nice, resonant and 'IBD' aroma'ed gas!

Dx'd July, 2006
Meds: Flagyl, Cipro, Pred, AZA.. to no effect
Low Dose Naltrexone Nov 2007 - May 2014
Remicade June 17th, 2014
04-09-2008, 04:57 PM   #5
D Bergy
Senior Member
Join Date: Apr 2007
When I was sick, I lost so much weight that I looked worse than I felt. Although I did not feel good, people, and my wife in particular thought I was near death. Maybe I was, but not being one to jump to conclusions, especially involving my own demise, I really was not too concerned until I lost muscle mass. Then I knew this was serious.

I guess got sick and recovered too fast to have any problem in this area.

Now I am just getting fat. This summers project of building a new house should take care of that.

04-09-2008, 06:34 PM   #6
My Butt Hurts
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Join Date: Aug 2007
I don't think anyone has said that to me.
Usually when I'm in a bad flare, I really DO look sick. I looked AWFUL during my last flare, real gaunt in the face and bony.
Just this week though, I had 3 people tell me either that I looked pregnant, or that my face was so round. Nice.
I have had people say "I WISH I had Crohn's" because of my quick weight loss.
I tell them I'd rather be fat and healthy than be skinny with Crohn's.
04-09-2008, 07:15 PM   #7
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Wellll, problem is that our lowest points... when we do look like death warmed over... eventually pass (you should see my drivers license photo, taken at my abs. worst/lowest... I look like skin stretched over a skeleton).. I looked much better last year, but despite that.... overall I was in pretty rough shape for most of it.
04-10-2008, 10:12 AM   #8
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I tend to also hide away in bed when I look terrible. This is why my wife and mother-in-law have a good understanding of what it's like but no one else really does. I've dragged myself to work really sick lately though and I've found it to be extremely humiliating when people really do see that you're as sick as you are.
04-10-2008, 10:24 AM   #9
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Join Date: Mar 2007
Depends on how long I've been flaring for. I know way back when I was in high school before anyone really knew that I was sick, one girl came up to me and asked if I was anorexic

I looked terrible. My face was sunken, I was just skin and bones.

There have been plenty of times where I've had the "you don't look sick reaction", though. It really bugs me when people are persistent and hound me about it because they think I'm just being lazy.
04-11-2008, 12:55 AM   #10
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Join Date: Jan 2008
I'd like to add that it does depend on my flare/non flare...but with the pred, it puffs up the cheeks and EVERYONE says oh you were getting so thin and sickly, looks like you're better now, when the scale may show 5 lbs. of "weight" put on and 4.8 of that is in my cheeks (perhaps the 0.2 is added milia or added anger inside my brain that has actual physical mass to it).
04-12-2008, 12:55 AM   #11
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Hear it all the guess is because when i first got sick with Celiac, i looked REALLY sick. And now I may suffer again, but the appearance hasn't changed except for looking a little bit of weight.
Not that I want to gain attention and look sick, but if I did I bet it would help the doctors believe I'm not making it all up.

~ Lisa ~

Celiac Disease, Jan/03; Asthma, Sept/04; Symptoms of an IBD, Jan.28/06; Esophagitis (cured) and Hiatus Hernia, Jan/07; Hypothyroidism, June 14/07; gallbladder issues, Dec/07; Lumbar facet arthritis, Oct.10/08; Iron deficiency anemia, Nov.3/08 (cured); Anxiety, May/09; Osteoarthritis, Mar/09; Hypertension, Nov/09; Osteoporosis, Nov/09; Levoconex lumbar scoliosis, Mar 17/11
01-01-2012, 03:53 PM   #12
Undiagnosed Teenager
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Join Date: Dec 2011
Location: England
My doctor asked if I was just depressed. I don't look ill and i'd just cried my eyes out in front of her. I also sleep a lot. Of course it's just depression, just forget the agony and pain I go through. I cry because i've been undiagnosed for years and it's not going any where but worse. I sleep a lot because I can't do much else.
It's horrible when your own doctor isn't even sure.
~ Tasha.
~ Seventeen years old.
~ South of England
~ All my cousins, aunts, uncles and grandparents have either CD or UC
~ Fifth year of not living my life properly due to the symptoms
~ Endoscopy, colonscopies, MRI scans, ultrasound scans, blood tests, biopsies, urine tests and so on!
~ Been on so many different medications and nothing actually helps
~ Latest diagnosis is 'Functional Dyspepsia'

01-01-2012, 05:41 PM   #13
Cross-stitch gal
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I agree with all of you! I think the girls at work have learned not to say that to me though during this flare. Especially the nights when I have to leave my register to run for the bathroom!
Ulcerative Colitis/IBD 1996, Iritis 2001, Ulcerative Proctitis 2013, Indeterminate Colitis 2016, Remission 2017, Hand Eczema

Current Meds:
Pentasa 1000mg 2xday or Mesalamine DR 1.2gm 2xday, Canasa Suppositories (when needed) 1000mg 1xday, Tylenol 3 with codeine 300-30mg (when needed)

600+D Calcium 2xday, Multivitamin, 65mg Iron 1xday, Fish Oil 1000mg, Vitamin D3 5,000 I.U., Eye Drops 2xday

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01-01-2012, 08:06 PM   #14
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People just don't get it. Unless they really do know somebody with IBD and they have really been exposed to the effects, they don't get it.
Surgery Oct 12, 2010

Crohns Medicines:
Started Humira June 22nd, 2011
Increased to weekly injections on November 1st, 2016
Due to the insurance company, Humira ended on January 31, 2017.
Started Entyvio February 9th, 2017
Loperamide 3 capsules twice a day
Vitamin B6, B12, Folic Acid
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Nature Made Multivitamin
01-01-2012, 08:55 PM   #15
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In the E.R. by a Dr. no less. Three weeks before he was diagnosed by a G.I.. She said he didn't look sick and commented that my husband and I are thin maybe he is just really thin too. UGH!!!
Mom of Johnny
Dx Oct 11 2011 Crohns disease
Prednisone done 12/30/11
6mp 50mg every day
Allopurinol 50mg -discontinued per new G.I. on 11/01/12
Multi Vitamin
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01-02-2012, 01:21 AM   #16
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Join Date: Oct 2010
I didn't like to look sick so when I was I fou d myself having to make a bigger effort to look well. I always put on fake tan to cover up the greyness I always washed my hair and straightened it before appointments and I always put on nice clothes. Even when I had the CT and it showed the perforation the radiologist said there was no way I looked like I had a perforated bowel!!! Now that I feel much better I don't need as much makeup thankfully as it was costing me a fortune.

Diagnosed Crohn's 2010
ileocecal resection 2010
Meds: Nil and in remission

01-02-2012, 07:34 AM   #17
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Join Date: Dec 2011
Location: Sydney, Australia
I've definitely looked sick when I returned to work after going to the Emergency with severe pain. I was washed out, not me, skinnier and with a boney face, wow, I just didn't like to look in the mirror anymore.
If I don't have a bad flare-up, people won't know I have Crohn, but the flare-up drains me, it's like having 100 stomach bugs, horrible.
I mean, it's flare-up most of the time, but there are times when it gets worse, I don't know why.
01-02-2012, 02:26 PM   #18
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Someone said this to me just the other night at a new years eve party, Someone I'd never met before, the wife of an old work colleague asking how i was. So i explained a little about what had happened over the past year "oh but you look really well", and her husband also commented on the massive amount of weight ive lost and that I "look good for it" and that im lucky........ I certainly dont feel lucky!....
My Story
Diagnosed 2008
Currently taking
omeprozol 40mg
codeine x4
ferrous sulphate
folic acid

ileostomy, colostomic mucus fistula stoma. gastostromy after recent surgery

tried, prednisolone, pentasa, azathioprine and infliximab
01-02-2012, 02:37 PM   #19
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Join Date: Jan 2012
Location: Johannesburg, South Africa
That statement makes me want to punch the speaker in the face!
Cortisone induced weight gain also prompts the "aren't people with chrons meant to be thin"
01-20-2013, 12:18 AM   #20
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I get this a lot, especially since I haven't lost any significant amount of weight since being diagnosed.
01-20-2013, 01:33 AM   #21
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Location: Mckinney, Texas

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I always looked very ill when I was flaring, so I didn't really have a problem getting people to believe me
Crohn's since 2007
15 Abdominal Surgeries since 2008
Severe Non-repairable abdominal hernia
Ankilosing Spondylitis
Inflammatory Arthritis

Failed meds:
Asacol HD
01-20-2013, 09:51 PM   #22
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Location: Chicago, Illinois

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Crohn's-Colitis May 2012
Current Meds:
6-MP (100mg) / Asacol (4800mg)
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Prednisone/ Entocort / Flagyl
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B12 Shot (1cc/mo) / Multivitamin / Vitamin D (1000iu) / Calcium (1200mg) / Omega 3 Fish Oil (4800mg)
Additional Info:
Anemia/Borderline Anemia - whole life
Generalized Anxiety Disorder - 2009 (Cognitive Behavioral Therapy, mindfulness meditation)

02-16-2013, 07:47 PM   #23
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I have two daughters who both have really bad Crohns disease. They are both very beautiful. I wish I had $50 for every time they have been told:"you don't look ill".
02-17-2013, 02:32 AM   #24
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that's just great
02-17-2013, 08:17 AM   #25
Join Date: Oct 2012

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I do tend to look sick. It does mean people find it easier to get that I have an illness, but it's not exactly flattering either!

Mostly it's because I'm often so thin. But people assume I'm anorexic. That must be the illness people associate with being thin the most. When I've been at a healthier weight, I didn't get that so much, but people often say I look tired - even when I'm not. I also have a slight tremor which makes everyone say I look cold, because it looks like I'm shivering. I generally feel the heat far more than most people, so that's the most contradictory comment for me. I'll be sitting there feeling too warm, and everyone's telling me how freezing I look. I think they associate being cold with being ill aswell.
02-17-2013, 10:15 AM   #26
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I voted yes because I've had a similar response from docs and nurses in the ER on regular occasions. I'm a fat Crohnie so it's inevitable that they comment "You don't look like a Crohn's patient." Yeah, I'm vomiting my guts out just for kicks because I LIKE THE ATTENTION. Yep, spending hours in the ER is like Christmas for me.
Crohn's of ileum dx'd 2008.
Imuran, 150 mg
02-17-2013, 12:47 PM   #27
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Join Date: Feb 2013
Location: Scotland
When I am on a flare I do look ill, but I mostly dont go out so not many people see me. Thankfully I work from home so I am lucky where I dont need to worry about going into an office. When I am not on a flare, everyone except my husband and daughter, thinks im cured. If I cancel a night out or something planned with friends as I am ill then the next day friends will text and ask how I am. How do you answer that one as they dont really want to know your still unwell or the details which go with it? Or maybe its just me who thinks they dont want to know
02-19-2013, 03:02 AM   #28
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that's just great
Ah! I love this!

And yes, saying this to me may 'cause me to punch you square in the face.

Crohn's Disease - Diagnosed 1/10

1st Resection-9/10
2nd Resection 1/13
Gallbladder 9/13

Currently: In severe back pain after gallbladder surgery with no answers.

Past Meds: Remicade, Azathioprine, Prednisone, Flagyl, Cipro, 6mp, Entocort, Pentasa, Celebrax, Humira bi-weekly, Ambien, Xanax

Current Meds:
Humira Weekly, Seroquel, Protonix, Klonopin, Lexapro, Iron Supplement, Zantac, Gas-X, Biotin, B12, Culturele, Zofran, Weekly Iron Infusions
02-19-2013, 07:28 AM   #29
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Location: York, Pennsylvania

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I also hate when people replay oh just IBD. So you just have problems pooping. I just want to punch them in the face! It seems like doctors here in PA (us) also don't have an idea about the disease except the GI specialist. Er docs are clueless!
02-19-2013, 07:35 AM   #30
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Join Date: Feb 2013
Location: Scotland
yeah all people think you do is poo. How about the extreme pain and being sick? The best one is "oh right I have IBS too" I dont have IBS argh! One of my brothers said "they tell everyone they have that if they dont know whats wrong with you" I DONT HAVE IBS......

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