Guest guest Posted March 9, 2005 Report Share Posted March 9, 2005 Home Help Loved Ones Understand But You LOOK Good Booklet All About IDA What People Are Saying Help Be A Voice Make A Donation IDA's Favorite Books IDA Featured Refer Site to Friend Add Banner Join Our Mailing List Sign Our Guestbook Links WebRings Contact Join IDA's Support Group QUICK INDEX! "Invisible Disabilities?" What Does That Mean? Click Here Home of The Invisible Disabilities Advocate Click Here "But You LOOK Good!" But You LOOK Good! A Guide to Understanding and Encouraging Loved Ones Living With Chronic Illness and Pain. 48 page booklet. Click Here Articles to Help Loved Ones Understand Click Here All About IDA Who we are, our purpose and how to contact us Click Here What people are saying about IDA Click Here Support & Communication Sign and View IDA's Guestbook IDA's Message Board Click Here IDA's Online Support Group Click Here CHAT: Every Saturday 8-10 PM Click Here Help IDA Get The Word Out! How You Can Be A Voice Click Here Make A Donation Click Here Add IDA's Banner to Your Site Click Here Refer This Site to a Friend Click Here Favorite Book Picks View Our Favorite Books and Find Your Own Click Here Resources Links to Other Websites Click Here Our WebRings Click Here But You LOOK Good! A Guide to Understanding Chronic Illness and Pain! BOOKLET AVAILABLE FOR ONLY $4.95 OR LESS, Including Shipping in the US! Prices available for orders outside of the US! Discounts for multi-packs! But You LOOK Good! Helps Friends and Family Understand Chronic Illness and Pain, What to Say, What Not to Say and How to Help! Click Here for more information about the booklet, pricing and how to order! Click Here to read Part One of the booklet for FREE! Sign up to receive periodic news on IDA by E-Mail! E-Mail This Page to a Friend! "We know that just because a car's paint, body and tires look like they are in perfect condition, does not mean the engine is too. Just the same, a person with a chronic illness or pain may look healthy on the outside, even though their organs, nerves and cells may not function well on the inside." Sherri Connell Please Note! The data contained in this web site are for informational purposes only and are not to be construed as medical advice. We do not give legal, financial or medical advice. View Site in Spanish, Portuguese, French, German, Italian. Copyright © 2005 The Invisible Disabilities Advocate All Rights Reserved IDA is a Colorado Non-Profit Organization Article Appeared in the Alliance Exchange Published by the Avonex Alliance Issue: August 1999 Coping with Invisible MS Copyright © 1999 ix years ago, Sherri Connell parked in a handicapped space at a shopping center near her home in Littleton, CO. When she returned, a sheriff's car was blocking hers. She showed the deputy her handicapped placard, her registration, her MS Center identification card, and her driver's license, and explained that she is allowed to park in handicapped spaces because she has multiple sclerosis. He put his hands on his hips, looked down at her in disbelief, and said, "I think you stole this placard. I saw you walk into the store, and I'm tired of people parking in handicapped places who don't belong there." Twenty minutes later, shaking and crying in frustration, Sherri demanded the deputy's name and badge number and told him that if he didn't move his car, she was driving through it. "I reported him," Sherri says, "and I got an apology from the sheriff's department. But I was totally humiliated." Sherri's experience isn't unusual. Many people assume that handicapped parking is reserved for those who use wheelchairs and find it hard to believe that someone like Sherri, 37, who walks normally and looks perfectly healthy, could possibly be sick. Even family members, friends, and caregivers can have trouble understanding the invisible symptoms of MS, which can include weakness, pain, fatigue, vertigo, and bladder and sexual problems, as well as cognitive changes such as difficulty in thinking clearly and memory loss. After Sherri recovered from her first MS exacerbation - numbness on her left side that prevented her from walking - a friend asked if she was afraid of losing disability payments if the local social service agency discovered that she was able to walk again. If she could walk, the friend said, surely she could work. "I could work in a wheelchair. It's the fatigue and the pain that sometimes keeps people with MS from working," Sherri said. "Most people with MS are not in wheelchairs, and we're not in hospitals all the time, either," says Liz Knepper, 28, of Chicago, IL, whose primary MS symptom is vertigo. "People at work who knew I had MS would say 'Oh, you got dizzy? That's not too bad.' But I'd go to sleep with my hand pressed against the wall to steady myself and wake up feeling that the room was spinning out of control. You can often explain fatigue, numbness, or vision problems, but when you tell people you are dizzy, they just don't get it." Even good friends can be inadvertently insensitive. "Sometimes friends bring me dinner, but they come too late or stay too long. I don't have the heart to tell them that I'm tired or ask them to leave," explains Liz. Speaking Out About Symptoms "It is important for people with invisible MS symptoms to describe what they're experiencing, so that they can get the help they need," says Professor Greenstein, MD, director of the Multiple Sclerosis Center at Temple University Medical School in Philadelphia. He urges his patients to educate friends, relatives, caregivers, and coworkers about MS. MS ActiveSource, MS society publications, and support groups are good sources of information for a better understanding of MS symptoms. These resources can also be used when you're trying to explain your invisible MS symptoms. Try to graphically illustrate how you feel. Describe how fatigue affects you as specifically as you can: For example, "I'm so exhausted I feel as if I would pass out if I tried to stand up." Tell what your pain feels like: a knife scraping your skin; a hot iron held to your leg. Or describe dizziness as Liz does: lying in bed with your hand pressed against the wall to steady yourself. You may have to remind people of what you've told them in the past: "Do you remember me telling you about the fatigue (or dizziness, numbness, or vision problems) I feel as a result of having MS?" You can also get help in dealing with problems related to invisible MS symptoms from Wayne and Sherri Connell's website, www.myida.org, which they designed to help people with MS and other chronic diseases deal with the "invisible" nature of their disorders. Sherri sums up the dilemma this way: "Some people think we have a chronic disease because we are weak. We need to help them understand that we are weak because we have a chronic disease." Copyright- Alliance Exchange Newsletter (August 99) © 2000-2001 Biogen, Inc. Site legal disclaimer | Contact Us AVONEX® is a registered trademark of Biogen, Inc. MS ActiveSource is a service mark of Biogen, Inc. Please contact the Avonex Alliance for permission to print this article. Please visit Avonex Alliance for all copyright regulations, publishing requirements and permission requests. But You LOOK Good! A Guide to Understanding and Encouraging People Living With Chronic Illness and Pain Order But You LOOK Good! For ONLY $4.95 or Less! INCLUDES SHIPPING in the US! Visit www.myida.org/booklet.htm For More Information and Multi-Pack Discounts! To Order by Mail: Please send $4.95 (for printing, binding, shipping, etc.) for each booklet (includes postage in the US). Make the check payable to "IDA" and Send Order To: IDA P.O. Box 4067 , CO 80134 *Note! IDA reserves the right to make changes, edits in content without notice. The booklet may differ slightly from the website! E-Mail This Page to a Friend! WWW http://www.MyIDA.org IDA's Home / Help Loved Ones Understand / But You LOOK Good Booklet All About IDA / What People Are Saying / Help Be A Voice / Make a Donation IDA's Favorite Books / IDA Featured / Refer Site To Friend / IDA's Banners Join Our Mailing List / View IDA's Guestbook / Sign IDA's Guestbook IDA's Links / IDA's WebRings / Contact Information Join IDA's Online Support Group Copyright © 2005 The Invisible Disabilities Advocate. All Rights Reserved. IDA is A Colorado Non-Profit Organization NOTICEIf you are having trouble viewing this page, please download the newest version ofInternet Explorer or Netscape Navigator.To do so, please click on the preferred link. Quote Link to comment Share on other sites More sharing options...
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