SCLERO.ORG
Search
Patient & Caregiver Stories Main Menu

(English) by First Name: A B C D E F G H I J K L M N O P Q R S T U V-Z

By Language: French   German   Greek   Italian   Polish   Romanian   Russian   Spanish   Turkish

By Illness: Main List, Linear/Morphea, Systemic Scleroderma, By Symptoms

Laura M: UCTD

A rheumatologist told me I do not look sick and to "get a life."

Roses & Geraniums for Laura by Sherrill Knaggs, ISN Artist I am Laura. I am forty-three, and after ten years of symptoms, tests, and doctor visits, I have been diagnosed with Undifferentiated Connective Tissue Disease (UCTD).

I have extreme fatigue (in bed, days at a time), muscle weakness, Raynaud's in hands and feet, extreme nausea, abdominal pain, joint pain, TMJ, low tone hearing loss in both ears, hair loss, lots of upper respiratory infections, slow wound healing, and the list goes on. I have finally had to quit my job (which I loved), but I have been out sick for too many days and each time I go back to work the cycle of sick days/good days starts again.

The rheumatologists that I have seen, have done the following for me: Told me to stop wasting my life, that I am not sick. Patted me on the knee and told me to come back in two months. Diagnosed me with lupus and put me on Plaquenil ; I had a bad reaction to Plaquenil which made my symptoms worse. The muscle weakness and fatigue got worse and then other problems arose. Told me I did not look sick and to "get a life".

As anyone who is going through this knows, having the doctors treat us this way just causes more stress. I had found a wonderful immunologist who diagnosed me with UCTD and referred me to yet another rheumatologist, who again told me to stop wasting my life trying to find out what is wrong. This was after I told her that I had been out sick fifty-six workdays over the past year and have finally had to quit my job. Her response was that I was probably depressed and that would get worse with quitting my job. She prescribed an antidepressant. This was after telling me I did not have an illness! Ugh.

If anyone reads this and is going through the same problems, I would love to hear from you. People who are not feeling these symptoms have a difficult time understanding. I can't tell you how many people tell me "you do not look sick" after asking how I am feeling. And then, of course, they come up with their own reasons why I feel like this.

I'm sorry this is such a long posting, but I hope it helps someone else see that they are not alone, because sometimes it feels like it to me.

To Contact the Author

Laura
Email: [email protected]net
Story posted 8-27-02

ISN Senior Artist: Sherrill Knaggs
Story Editor: Judith Devlin
LINKS
Hair Loss
Lupus
Raynaud's
TMJ
UCTD

ISN Artist: Sherrill Knaggs (In Loving Memory)

Sherrill KnaggsSherrill Knaggs, ISN Artist, created the digital photo to illustrate the story on this page. Sherrill lived in New Zealand. Her story was featured in ISN's book, Voices of Scleroderma Volume 2.

ISN Story Editor: Judith Thompson Devlin

Photo of JudithJudith Thompson Devlin is the ISN Story Editor for this story. She is also lead editor of the ISN's wonderful Voices of Scleroderma book series!

Go to Laura S: Morphea Scleroderma
 
United Way of Central New Mexico
United Way of Snohomish County
See ISN News for recent donors, including memorials for
Jim Miller, Arlene Marie Petulla, Frances Maude Baldwin Watson and Rubye Mai Blocker Westmoreland.
Thanks to Winn Schillberg for donating to scleroderma research.
Donate or Shop Now
 

TOLL FREE HOTLINE, U.S. and Canada: 1-800-564-7099
Ask for our Free Info Packet by email or postal mail!

SCLERO.ORG is the world leader for trustworthy research, support, education and awareness for scleroderma and related illnesses, such as pulmonary hypertension. We are a service of the nonprofit International Scleroderma Network (ISN), which is a 501(c)(3) U.S.-based public charitable foundation, established in 2002. Meet Our Team, or Volunteer. Donations may also be mailed to:

International Scleroderma Network (ISN)
7455 France Ave So #266
Edina, MN 55435-4702 USA
Email [email protected] to request our Welcome email, or to report bad links or to update this page content. Privacy Policy.
 

The most important thing in the world to know about scleroderma is sclero.org!

Donate Now
Copyright 1998-2017, International Scleroderma Network. AKA Scleroderma from A to Z and SCLERO.ORG. All Rights Reserved.