Continuing our observance of MS Awareness Week, we’d like to introduce you to longtime PatientsLikeMe member Dr. Dee Kite (“CoachDee”), who has been living with multiple sclerosis (MS) for over 23 years.
A life coach who specializes in MS patients, Dee became interested in social awareness, or how best to talk and interact with a patient with MS. What kinds of comments are insensitive, for example? And what is that MS patients would love to hear instead? Find out about that and more in our two-part interview with the author of The Dumbest Things Smart People Say to Folks with MS.
What led you to write the book – and how did PatientsLikeMe play a role?
When I was diagnosed with MS in 1995, I lived with a feeling of panic and struggled just to survive. I remember the first advice I received. Trudy, a woman brimming with confidence and good cheer, told me, “You may not be able to do much about MS, but you can have a positive attitude.”
I felt so ashamed because no matter how hard I tried, my attitude was NOT positive. Physically I was pretty much okay, because being blind in one eye and feeling like I had the flu every afternoon were not going to kill me. Emotionally I was not okay. I didn’t know what would happen next, and I was scared. I’d sneak out of the bedroom at night so my brand new husband, Scott, wouldn’t hear me cry.
Looking back over the 17 years I’ve had to tell others I have MS, I realize they too probably felt sadness and fear. But instead of openly admitting this, most preferred to tell me what I should do to cure my disease or alleviate symptoms. Katy said I should ride horses because “Shelia” had been cured when she rode. Another person urged me to rush out and be stung by bees. A sure cure!
I continued to receive prescriptions for off-the-grid MS “cures” when what I really wanted was just simple conversation. I wondered what others living with MS were hearing. I thought if they were having similar experiences it might be a helpful topic to write about on my website, MyMSCoach.com. So I posted this question in the PatientsLikeMe MS forum: “I’m trying to collect the worst things people have said to us so I can help educate them about what we really need to hear. Has anyone said something to you that didn’t help or even made you feel worse?”
The floodgates opened, and PatientsLikeMe members responded (and continue to respond years later!). The thread generated such passionate responses I was amazed. Some things people had heard were so shocking I gasped. Others were so sad, I cried.
While I had just been thinking of an interesting topic for an article, the patients who were sick and tired of thoughtless comments saw an opportunity to be heard. One woman said, “You need to write a book about this!” Another patient said, “Yeah! 1,001 Things Not to Say to Us!” So it all began right here on PatientsLikeMe.
If you had to choose, what are the top three dumbest things you could say to someone with MS?
It’s hard to choose three, because there are so many dumb things! Here are three “classics” because most of us have heard them:
- You don’t look sick,
- _______ (insert name) died from MS
- _______ (insert person) has MS and is doing so much better than you.
Here’s another great example of a dumb thing. Brenda parked in a handicapped space. A mother and her kids ran up to her shouting, “That is the most inconsiderate thing you can do! I have a handicapped husband!” Brenda turned and said, “I have MS.” The woman practically growled. “There’s nothing wrong with you.”
Brenda just got back into her car and drove home. She didn’t know what to do. And she wondered, what does handicapped look like? With MS there is no way to know. It can be so demoralizing to always be in pain and then to be continuously wounded emotionally by other people’s perceptions and projections. That’s what The Dumbest Things Smart People Say to Folks with MS is all about, how the lack of awareness can deeply hurt us. And a lot of times it’s somebody we love.
Read Part II of our interview with Dee.
I’ve had MS since (at least) 2005 ~ and haven’t worked or had a ‘normal’ life since. My career, my hobbies, my family & friends… all those circles have changed.
I’ve learned to be more patient and considerate of others; because I’ve learned from personal experience that you can’t always see struggles, challenges, abuse, neglect, disease, etc…
Multiple sclerosis wasn’t invited in my life, but now that it’s here, I embrace it as part of who I am. I’ve learned from it. And now I try to be more aware not to judge or focus on the weaknesses of others ~ including those who haven’t learned yet how much sensitivity is due.
Let’s try not to focus on how insensitive or ignorant others can be, and focus more on how sensitive and aware WE can be toward others.
I love this: after all, if we can’t laugh about the things people say, what CAN we do?
It’s good to have a place to vent so we can face the world and let these kinds of comments roll right off us.
One of my favorite moments since I was diagnosed was when a friend of mine said “Well, you *look* wonderful!” and I looked her straight in the eye and said “Yes, fortunately MS doesn’t cause deformity, so thank you!” She cracked up, and so did I.
I don’t have MS however my son-in-law has Muscular Dystrophy. When I’ve told folks this they’ll say “Oh, I know ____(insert a name) has that and she does ‘such and such’ or is ‘such and such’. They most ALWAYS confuse the two and generally have no idea what they’re talking about. I also have friends who have MS and I try to be sensitive to them. Hopefully I haven’t said “dumb” things!!!
Hi Dr. Dee,
I love your book, The Dumbest Things Smart People Say. I have lived with MS since 1985, but I’ve been symptom free since 1990. I, too, am a coach and an author. I speak at a lot of support groups. One time a patient, using a walker, came up to me after a workshop and said, “You may not have symptoms now, but someday you’ll be just like me.” I looked her in the eyes and saw fear, as I responded, “Oh, but instead wouldn’t it be nice if someday you could be just like me.” Anger and fear makes us say the darnedest things. May we all help each other heal in any way that we can. Looking at our Conversations and the way we voice our concerns is one of the best places to start.
Judith
I friend told me her neighbor has MS and “she is really very, very thin”.
I got diognosed in 1979 and in all the years I’ve had it I’ve never heard of anyone dying of it, Living with it is something you don’t have a choice with but dying no. I find it an “inconveneince” it stops me doing what I want to do, but thats it.
The problem seems to be if I jump out of a plane on a parachute, I’m going to hit the floor, thats always down there. It’s getting up and walking to the transport, thats a problem!
Thanks for your comments!
Great comeback, Linda, I’m going to use that one myself :))
Elizabeth, I know what you mean about saying Dumb Things ourselves. Since I wrote the book I’ve been much more alert and have noticed I say quite a few dumb things. At least now that I’m aware, I’m saying fewer.
Judith, I admire your patience and kindness. Keep up the great work!
Anonymous I hope your comment is just in reaction to the title. I worked very hard to ensure the book did not come across as judgmental or preachy. I think I succeeded…here’s part of one reader’s reveiw:
As a spouse of someone who has Multiple Sclerosis I can honestly say that I have made most of these mistakes. The mistakes mentioned in this offering that I haven’t personally made, our friends and family have committed. It’s a book about common sense, acceptance, forgiveness and self-reflection. The beauty of the book is in its brevity. It reads like you are getting advice from someone who understands that as a caregiver to someone, you are going to make mistakes by expressing thoughts that hurt your loved one who is afflicted with the disease. The book also leaves us with the impression that those hurtful statements are perfectly normal, and that we can gain a greater understanding of the disease and learn to limit our utterances to those of a more positive and productive nature.
Please tell the author that visitors to MS UpClose often ask about the best books to read (and I have recommended a few on our facebook page). I would be grateful for a copy of the book so that I can review and most likely recommend it. Thank you!
Susan
I was dx in 1986 with MS by a neuro md. Was a specialty driver for the elderly and disabled at the time. Neuro advised me to switch to a less taxing career. I moved, went to school and became a RRT in a hospital for several years. I thought I was in remission all that time. It came back almost six years ago, I did not recognize it as a return of my MS until 3 years ago. I saw neuro mds on and off during that time with ambiguous results. My current neuro now says I have PPMS which I do not believe nor does the rest of my health care team.
I have re-grouped, re-aligned, reorganized a few times in my life since my dx way back when. It is effective when I can utilize my plan. I search for information, adapt whenever possible as my needs change, and accept that change is inevitable and a challenge to be met. Not easy to re-invent myself, I mourn the loss of some abilities and fight to find new abilities. Its exhausting!
I constantly get remarks when I park in the handicap parking. Just because I look young does not mean that there is nothing wrong with me. Actually there IS NOTHING wrong with me, I have MS. The rudest comment I get is, “Are you supposed/allowed to park there?” People will never understand because there are people who abuse the priveledge to park in handicap by using family members placards. It’s sad.