4 posts tagged “MS Awareness Week”

Interview with Dr. Dee Kite, Author of “The Dumbest Things Smart People Say to Folks with MS” (Part I)

Posted March 15th, 2012 by

Dr. Dee Kite ("Coach Dee"), a PatientsLikeMe Member and Author of "The Dumbest Things Smart People Say to Folks with MS"

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 Dumbest Things Smart People Say to Folks with MS, a Book That Was Conceived at PatientsLikeMe

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.

MS Awareness Week: Real-World Descriptions (and a Poem!) from Our MS Community

Posted March 12th, 2012 by

We kicked off MS Awareness Month by sharing some key facts we’ve learned from our MS community (26,000+ members and counting).  Now, we are digging a bit deeper in honor of MS Awareness Week.  You’ve already heard about common MS symptoms as well as frequent topics in our MS forum.  But what it is really like to live with MS – and how does MS impact not just those diagnosed with the disease, but all of us?

The National Multiple Sclerosis Society (NMSS) has put together a video showing all of the ways MS impacts individuals, families and society.  For example, did you know that MS costs the US economy $28 billion each year?   Or the average MS patient $69,000 per year?  Another startling fact is that the average person with MS leaves the workforce 10 years after diagnosis.  (Most are diagnosed in their 20s and 30s).  Check out the video above to discover more about how MS impacts you, even if you don’t know anyone with the condition.

As for an accurate picture of life with MS, the best descriptions come from those who know best – MS patients.  In a recent discussion in our MS forum, patients asked each other what one word they think best sums up life with this chronic, often disabling disease of the central nervous system.  What were their responses?  Here is a word cloud illustrating 30+ answers submitted by our community.

A Word Cloud of Members' Answers to "Describe MS in One Word"

Putting words together in a full portrait, below is a poem by friendinflare, a three-star MS member who has lived with MS for 10 years.  Not only does she depict some of the issues MS patients face, but she also speaks to the relief that comes from sharing your experiences with others like you.  (At PatientsLikeMe, you can share treatment and symptom data, status updates, private messages, forum discussions and much more.)

In early November, I discovered a website.
A place where MS’rs can talk about our plight.
Our symptoms are as varied as our usernames.
There are threads for information, advice and even games.
We have legs of jello, vision that’s blurred,
And limbs that tremble from damaged nerves.
We still remain hopeful – but no one’s been cured.
“Daily injections will help” our doctors have reassured.
Our fatigue gets so bad we are glued to our beds,
We have cognitive issues from lesions in our heads.
Most don’t understand us, we’re a breed of our own.
We talk everyday without picking up a phone.
Our computers are a lifeline to hope,
Letting us talk with MS’rs from all over the globe.
Even though fights can break out at lightning speed,
Members always support those in need.
Here’s to everyone at PatientsLikeMe.

Getting a clearer picture of MS?  Good – but there’s even more to come.  Stay tuned for our two-part interview with an MS patient who authored a book called “The Dumbest Things Smart People Say to Folks with MS.”