Excuse Me?

Some REALLY dumb things people have said about scleroderma:

I've had CREST for several years. I developed a severe finger ulcer that was partially under a fingernail at one point. My PCP had recently retired, so I visited the "Doc in the Box" that bought him out and saw a physician assistant. I explained to him that I had severe Raynaud's and was concerned that the ulcer was infected. He assured me that it wasn't an ulcer, I had a fingernail fungus. He said, you know, you probably got that getting your nails done. I held up my hands with their thickened cuticles and rough nails and said, look at these hands! I've never been to a manicurist!!!!!. He insisted and gave me a prescription for Lamisil. Later, I got in to see my rheumatologist who couldn't believe he put me on an anti-fungal!

I was working at a hospital and had to go to a meeting where a well-known medical professional was introducing a new insurance policy to the hospital's employees. Part of the "sales pitch" for this one-option only policy (to take it or go uninsured), was that if we have regular, long term meds, we will have to either have them mail ordered to our homes after the third script, or pay three times the retail price for all scripts thereafter. Imagine prednisone at three times the retail price! She went on to say that if we take medication for diabetes, we could get a 25% discount. I mumbled (in the front row) "Wow! Makes me wish I could trade what I have for diabetes." She replied with a cocky laugh, "NO. Nobody wishes they had diabetes." I said, "You've never heard of scleroderma, have you?" I started to get up and leave, and couldn't believe she actually replied, "No, I haven't. But I know you wouldn't rather have diabetes."

After telling a 'friend' of mine that I have linear scleroderma in my face, and explaining to her what it meant, she said, "Wow how can you live with that? If I where you, I'd commit suicide!"   I never talked to her again.

I went to my GP and complained that my nailbeds were hard and sore and that I had Raynauds. He grabbed my hand looked at the icicle aka my finger and said 'do you smoke, cause, people who have Raynauds and smoke get gangrane and have to have their fingers cut off. A few months later I complained about my hair falling out. He looked at my scalp and said looks healthly to me. I then complained that I couldn't extend my right arm all the way and that my shoulder was in extreme pain. He said, 'gee, you should really get that looked at.' I thought I was. Needless to say I found a new doctor who immediately diagnosed my with CREST and referred my to an excellent rheumie.
 

After my precious Mother struggled and suffered with Scleroderma and CREST, undiagnosed, for over eight years, she passed away from destroyed lungs and heart damage in our local hospital.  Her heart specialist was out-of-town, and when I called his office the next week, as a matter of courtesy, and told his receptionist Mama had died a few days before, this idiot of a woman said, "Oh -- well then I'll cancel her appointment for next week."  It was very fortunate for the receptionist that we were separated by a phone line.  My beautiful, compassionate Mother was gone, the victim of a cruel disease, while this receptionist creature, in my opinion, was merely taking up space in the world.

When I was first diagnosed by a rheumatologist she did the tests and when I went back to her for the results her quote was, "You have scleroderma". I asked her what did we do for it her answer was "Nothing it is FATAL". She walked out and said to make an appointment for 3 weeks later. Needless to say I never returned.


When telling a co-worker that I had scleroderma her first response was "Change your drivers license to a non-donor. I sure wouldn't want my family to get any of your organs".

The doctor who diagnosed me said, as if I should have expected it, "Yep, it's Raynaud's." After a long pause as I expected him to expand on that, I asked what that is. He said, "It's a vascular disease, and you have the antibodies for Scleroderma. I don't have any information for you but you can find it on the internet and I will refer you to a rhumatologist." At least he spelled it out for me before he left the room!
But my rhumatologist was worse. He had exactly ten minutes to spend with me and every time I tried to answer his questions he cut me off. He finally said that if I'd had the disease as long as I'd had symptoms, I'd be dead by now! He said this on his way out and I haven't seen him since!

When a new employee came into my office several months after I was diagnosed with scleroderma, she overheard me speaking to someone about my symptoms.  She later asked me what I had.  When I told her she said that her friend's mother had been diagnosed with the same illness, but had had trouble finding someone to treat her in their small town.  We chit chatted and I was glad to hear of someone who wasn't dead.   Little did I know.  Several months later I asked her how her friends' mother was doing.  Her face went pale as she said, "you know I thought about this after I spoke to you.  She actually died about 2 years ago.  I didn't mean to mislead you. Sorry".

I have both Rheumatoid Arthritis and Scleroderma. One day while I was in my seventh grade science class, my teacher was talking about diseases and someone brought up the subject of Arthritis. My teacher told them that they didn't have to worry about getting Arthritis yet, because "only old people get arthritis." I got so mad at her, because I was diagnosed with arthritis when I was only eight years old.

Another time, there was a kid who was walking behind me in gym, and my scleroderma (which I have had since I was four) is on the back of my leg, and of course I was wearing shorts. In front of the whole class, he yelled, "*my name here*, ARE YOU ANOREXIC?!?!?" I turned a bright red, because even though my leg is very thin, the rest of my body is also on the thin side, so I didn't know if other people would start to believe that I was anorexic. Later that day, I decided to tell that kid that I was very offended by what he said and I explained to him the reason my leg was so skinny. He apologized, but I still get little remarks about it from people.
 

A co-worker said to me, "Well you have a very patriotic disease, that's neat."

I was with a fundraising group selling tickets to benefit scleroderma research outside of a huge liquor store. One party animal looking biker guy said "Sclero-wha? That sounds Like something I should have."
 

While struggling to get my fingers to move enough to get my money out of my wallet, the checkout clerk snarled, "What are you doing honey, waiting for your nails to dry?"

The first rheumy I went to explained that I had CREST. When I asked him what it was, he mumbled some $10 words and stuck a brochure in my hands from the Scleroderma Foundation. On one of my next visits, when I mistakenly referred to my CREST as scleroderma, he went ballistic and told me I didn't have scleroderma, only CREST!!! He was such a moron that he would spend more time talking about being on the board of directors at his synagogue than giving me any explanation as to the symptoms that were cropping up with my disease. I finally got sick of this guy when I called him for results of some tests and he didn't bother calling me back for 2 weeks. Found another rheumy who told me that, yes, I had scleroderma, just the CREST variation. (He also was caring and didn't give me his resume on visits!!!)

When I was having all the weird symptoms and the joint pain increasing, my GP sent me to a rhematologist that said "don't you worry, that's my job" and calls me @ home and says it is inflammatory arthritis she thinks. I accept it although my GI symptoms didn't fit that diagnosis. About 3 months later, I show up @ the GP's office in terrible pain and swelling and say "What is this? I'm getting worse every day!" The GP says ,"It's the progression of the scleroderma". I am mortified. 1) I feel the specialist just plain lied to me & 2) I am a RN (Bachelor Degree) and I can understand medical info of all kinds. Needless to say I never returned to that particular specialist again. I can do without expensive fibs

I visited an gastroenterologist due to stomach pain. He didn't even examine me, just said, "It's your CREST. Come back when you can't swallow. I'll put in a feeding tube. I'm putting one in for a lady in the morning." I replied I may need a feeding tube someday, but you wont be putting it in. I went to a female gastro. That was 4 years ago. Thankfully I'm still swallowing.

A co-worker told me that my "fake tan application" looked awful. (linear
morphea)
 

After 6 months of hesitating, I finally decided to go to the Doctor and tell him about the symptoms I was experiencing. Once I was finished he asked me if I ever read the book "Emotional Intelligence". My reply was no. His
advice: buy "Emotional Intelligence", read it and get the prescription filled for Paxil (an anti-depressant) right away!!!
 

A colleague at work saw my handicap card for my car for the first time, when I first got diagnosed. She exclaimed "you sure are lucky to have the handicap card." I offered her the card, if she would take the disease with it.

When I was diagnosed with scleroderma, I had to take pictures before I started treatment for the skin only (they didn't know what to do for the organs). when I went in to get the pictures taken i had to stand there in my underwear and bra, and they didn't match, I was already embarrassed just standing there getting my pictures taken in my underwear and my bra, and the guy came in and said "Well isn't this cute?" and I said "Whats cute?" and he said "Well don't you feel like a Victoria Secret model, but without matching underwear?"

I am constantly asked how I stay so tanned, and people wish they had my skinny legs. I have lost most muscle mass in my legs because the skin has hardened on my ankles and tops of my feet and it is very difficult to maintain muscles in my legs. Would someone say that to a person in a wheelchair? I think not.

I have scleroderma and accidentally got pregnant while I was on Penicillimen and Plaquenil. Needless to say, my husband and I were very concerned about the baby. I didn't have any morning sickness, but a co-worker of mine was also pregnant and had extreme morning sickness. I am sure she didn't realize what she said, but none the less, it really hurt. She said "I would love to change places with you...you are so lucky." I couldn't believe she said that. I responded, "Okay, let's see...you will be sick for a few months but have a perfectly healthy baby. I do not have morning sickness, but may have already damaged my baby's health, and I am stuck with an illness for life. Okay, you arrange it, and I will gladly change places with you." She was speechless. Incidentally, I lost the baby a short time later and was unable to get pregnant again. I am still sick, and she has a healthy baby boy.
 

I took my son to our family Dr for his regular check up, he wasn't in and there was a lady to take his place that day. When she was looking at his leg during his physical she said OH MY I think we need to wash a little better........... He has linear on the right side of his body....... I was so mad I made her apologize to my son and we walked out. My son ( 9 at the time) said boy she doesn't have any manners....
 

When I was diagnosed in March 2001 my doctor told me that I have an illness called scleroderma. Never hearing the word before I said ," IS THIS
SERIOUS?" He said yes it is. Then he proceeded to tell me to go home, get a
good support group and read all you can on the internet!!
 

I was once riding one of the little carts at Wal-Mart and an acquaintance asked, Are you trying to draw attention to yourself? I said, if I wanted to do that, I could sure think of better ways to do it than this! She turned on her heel and walked off.

I was diagnosed 17 years ago and have all the classic symptoms of CREST .  Recently I went to a GP for a chest cold and after the consultation the doctor walked out into the crowded waiting room with me.  He called across the room to his nurse asking her to make a diagnosis of the red patches across my nose and cheeks.  He said in a booming voice, "Isn't it the best case of scleroderma you have seen? Fascinating! ".  Well every pair of eyes in that waiting room was riveted on my face.  Some doctors are the most insensitive so and so's.

I was scheduled for a "complete" physical the day I was given the diagnosis that I had scleroderma (and was misdiagnosed with the systemic form instead of morphea).  When the rheumatologist was done with me, he called upstairs to the gynecologist, and I heard him say "she's on her way--she's a very pretty girl, you'll enjoy examining her".  Yikes!!!!!!

A few years ago I had a terrible ulcer on my finger that lasted for more than a half of a year. The rheumatologist that I had at the time was a jerk. After seeing me for a couple of visits, he looked at it , scolded me and said "This is your fault".

When I first found out I had Scleroderma I told my supervisor. He asked me what that was and I said my organs were all fibrosing and turning hard like stone. He laughed and said "Well we could always use you for a doorstop."

I was on my way to go on vacation - when at the airport I went to get breakfast at a coffee shop - I get my breakfast, I walk to the cash register when the girl at the register said "My God what happened to your hands - were you in a fire"? What a way to start my vacation!

Whenever I have been in the hospital, everyone says "oh, what a beautiful tan you have, have you been to Florida?" I say, no, I have scleroderma, and their faces drop. Also, my doctor brings all of his student doctors in to show me off. He says here is a nice lady with a classic case of CREST syndrome. I told him I'm going to start charging him.

My sister is an RN and lives out of state. When I first received my diagnosis, I thought she would be a good one to ask questions of, have some discussions with and receive support from. I booked a flight for a short stay with her. At first she wouldn't believe me. Then said "Well, if that's what you have, I feel really sorry for you because your body will literally turn to stone. Would you like to read about it?" Well, I still visit her, we still do sisterly things, but we don't talk about my illness!!

After about 15 years of dealing with various symptoms that would come and go and move around, I was diagnosed with CREST. The rheumatologist who made the diagnosis was very attentive and helpful...until, at a later visit, I told him that my husband thought I was a hypochondriac. After that his whole approach changed. He said, "It's not so bad having CREST, is it? (In his defense, I do have to admit that I am not as bad off as many of his patients.) I was trying to fit all the pieces of this puzzle together, with his help, so I was telling him lots of symptoms. He told me that I worried too much, and asked me if I was under a lot of stress. He told me I was a very healthy woman...COME BACK IN THREE MONTHS! I haven't been back!

When I went to my dermatologist with ulcers on my fingers (at the age of 10), the doctor treated them as warts and tried freezing them!!! He froze my "warts" for 6 months and as I cried out in pain he yelled, "Stop screaming and sit still! If you washed your hands more these warts would stop spreading!" What a JERK!!!!!

When I first developed Raynaud's, I went to my family doctor. She looked at my hands and said "I hope it isn't scleroderma because if it is you will end up on a dialysis machine." Then she sent me to a surgeon for a diagnosis because she said he could cut nerves to the hand and keep this from happening!

When talking to a co-worker about my diagnosis of Scleroderma I had said to her that you just do not know who it will strike and her response was: "I am too busy to get Scleroderma". Oh, that explains why I was struck with it, too much free time!