Article posted in Annie’s Mailbox on January 3, 2004.
Reprinted from a "Dear Annie" column from a woman with MS – applicable to all with chronic illness.
Helping understand multiple sclerosis [or any other ongoing illness]
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.
Portions of this article contains excerpts from publications which are Copyright © 1991 – 2004 The Invisible Disabilities Advocate www.MyIDA.org
– Issue: July 18, 2004 –
Saturday, September 8th, 2012
We are excited that Giving Tuesday is coming up soon. It is a once a year event and is a perfect accent to the holiday season. Unbeknownst to the commercial world, the holiday season is not about who gets more for me, me, me. It is about that special feeling you get when you know you have really helped out someone you care about or love. It is knowing that the dollar you give today is going to blossom into a million dollars worth of relief from suffering for the people with HSP and PLS. Welcome to Giving Tuesday and we Thank You for your consideration.
When Clinical Trials begin in 2017 it may require as many people as possible for the Clinical Trial to be effective. If you have HSP or PLS, please add your information to our data base so we can keep you informed. We are missing a lot people's email address, so if you just want to add your email address. just enter your name, address and email and we'll add it. That way, we will be able to reach you quickly at a lower cost. Your privacy is very important to us. We will never share any of your information with any individual or company without your permission.
We operate out of the strength of our community, caring friends and sponsors. Your help makes a difference! Our volunteers give many hours of their time annually, and the opportunities to help are as varied as our helpers. Read more.