“The problem I think the Multiple Sclerosis [MS] field has is that clinicians focus on the many negative measures, the absence of negative measures. Let me just list the words used in the literature about MS to describe what [clinicians] think is happening to me” a voice rang out from the crowd.
“I have an incurable, degenerative, debilitating, disabling, costly, physically and emotionally challenging, incapacitating, deteriorating, demyelinate, progressive, fatiguing, painful, depressing, regressive, crippling, immobilizing, paralyzing, handicapping, recurring, relapsing, chronic, malignant, worsening, active, accumulative, dysfunctional, disabling, fluctuating, inconsistent and incurable disease.” The voice paused and looked around the room before continuing.
“So, I have a choice, I can have all of these descriptions and be miserable or not. I choose not”.
This powerful and emotional telling came from a man attending the MS Conference at Stoweflake Inn & Spa in Stowe, Vermont on April 21st, 2018. Randy Messier, a quality improvement scientist with the MS-CQI Team, just finished presenting about the patient and researcher challenges associated with the MS- CQI Study. It was at the end of his talk that Randy called up on this a man in mid 50’s who raised his hand to speak about his MS experience.
This man seemed to convey the emotions of the entire room of people as he spoke. “I just want the world to view me as a person; not a diagnosis. I like to think that people like me are not MS patients but rather people with MS.” The audience resounded with murmurs of ‘yes’ and ‘that’s right’. “I want doctors, nurses, friends, family, and everyone else to see me as me. If I think of myself as ‘degenerative, crippling’ or any of these other words, well it makes me feel like I have no hope and that’s not who I am.”
“I like to think that people like me are not known as ‘MS Patients’ but rather ‘people with MS’ “
Applause erupted from the room. In turn, multiple people started to stand up and vocalize what their experience has been; whether a person with MS, a friend of someone with MS or a family member caring for their loved one with MS.
Dr. Messier listened to each person, each individual story. Moved almost to tears, Randy nodded along. “I think you are right. It is important how we phrase things.” Randy responded. “Words have meaning and can influence us without us even realizing it.”
