Dear Annie: As a person living with multiple sclerosis, I'm amazed how many friends no longer stay in touch because they don't understand the disease. I hope you will print this essay so people will realize how we feel. Greenville, Mich.

Dear Greenville: Here it is. We hope it helps.

Don't assume that because I look well that I feel well. Looks can be very deceiving. Many days I look great but feel terrible.

Don't say, "I know how you feel." No one knows how anyone else feels. We all have varying thresholds of pain, and pain cannot be measured.

Don't tell me about your Aunt Gertrude and her MS [or other illness] and how she managed in spite of it. I am doing the best I can.

Don't tell me, "It could be worse." I don't need to be reminded.

Don't decide what I am capable of doing. Allow me to make those decisions. There may be times I'm wrong, but I'll know soon enough.

Don't be upset that you cannot ease my problems. It won't do any good for both of us to be miserable.

Don't ask me how I feel unless you really want to know. You may hear a lot more than you are prepared to listen to.

Don't assume because I did a certain activity yesterday that I can do it today.

Don't tell me about the latest fad cure. If there is a legitimate treatment, my doctor will let me know.

Do realize I am angry and frustrated with the disease, not with you.

Do let me know you are available to help me when I ask.

Do offer me lots of encouragement.

Do understand why I cancel plans at the last minute. I never know from one day to the next how I will feel.

Do continue to invite me to activities. Just because I am not able to bike ride along with the gang does not mean I can't meet you for the picnic at the end of the trail. Please let me decide. Thanks.

This Article contains excerpts from the publications of The Invisible Disabilities Advocate www.MyIDA.org

- Issue: July 18, 2004 - 

We received several comments on the essay "Don't Assume," most from readers who appreciated how well it expressed their own feelings about living with MS. Others might find it helpful to know that many of the sentiments evoked by (and possibly the inspiration for) that piece can be found at The Invisible Disabilities Advocate (www.InvisibleDisabilities.org).

Please e-mail your questions to anniesmailbox@comcast.net, or write to: Annie's Mailbox, P.O. Box 118190, Chicago, IL 60611. 

Portions of "Don't Assume" contains excerpts from publications of The Invisible Disabilities Advocate's publications found here at: www.MyIDA.org This version of the article (focusing on MS) was published in Annie's Mailbox January 03, 2004 - submitted anonymously by "Greenville, Mich." A slightly different version of this article (focusing on Arthritis) was originally published in Ann Landers on October 11, 2000 - submitted by "Joy" (no affiliation to the Arthritis Foundation).

 

Copyright Regulations: You may print copies of this article as long as you include the following disclaimer: Portions of this article contains excerpts from publications which are Copyright © 1991-2004 The Invisible Disabilities Advocate www.MyIDA.org  If you would like to re-publish this article on your website or in your publication, please contact the editor of The Invisible Disabilities Advocate by e-mail.

 

To the person who put this excerpt together, we would be glad to give you proper acknowledgement. Please contact us by e-mail. You must be able to show evidence by way of prior publication of this essay.

 

But You LOOK Good!    A Guide to Understanding and Encouraging People Living With Chronic Illness and Pain   Order Online at: www.MyIDA.org   To Order by Mail: Please send $5.25  (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, Parker, CO 80134   *Note! IDA reserves the right to make changes, edits in content without notice. The booklet may differ slightly from the website! Proceeds go to IDA.