What NOT to tell an MS Patient
It is often hard to find the right words when talking to a patient, friend or family member with MS. Even with training and awareness of the disease, we often blurt out something we think is innocuous only to find out later that we have deeply offended. It turns out that “you look good,” is one of those seemingly innocent comments that can cut both ways.
Understanding these nuances is critical for brands in building trusting, long-term relationships with patients. In a study my healthcare agency, extrovertic, commissioned from WEGO Health, a network of Health Activists we found that among online MS Health activists, that “you look good” is a double-edged sword. Our Patient Engagement Study: Eye on MS, found that When Health Activists were asked about the most encouraging and discouraging thing someone had ever said to them, “you look good,” ended up in both columns. While some people took the comment at it's face value, many others thought it carried a negative double meaning such as “you look good-you can't possibly have MS or you must be exaggerating about the symptoms.
It's important to note that, with this audience, the reaction is not driven because people with MS are hypersensitive about talking about their disease. In fact, the Health Activists profiled in the Extrovertic study, were very open to talking to friends and family about all aspects of MS. In fact, when asked to rate their comfort level in talking about various topics, even sensitive subjects like incontinence and sexual dysfunction didn't fall below a 3 rating on a 1-5 scale with 1 being not at all comfortable. If these Activists were really uncomfortable, we would have seen ratings more in the 1 and 2 range.
It is the MS community's desire to help each other helps them overcome the discomfort of taboo subjects. As one of the Health Activists told us, “If I can talk about my bowel movements in great detail on the internet then nothing about my MS makes me uncomfortable.” Actively talking about MS also makes the world an easier place for them to operate in. As another Activist told us, “I'll talk about anything to anyone. The more people I can educate about the different versions of MS the more comfortable it is for the rest of us to function in this world.”But be aware that their openness also makes them vulnerable to some surprisingly negative comments from the public at large. Some of the more discouraging comments reported in the study were:
On the flip side, people with MS receive positive comments about their personal resiliency, the slow disease progression and the hope for future treatments
“This disease will kill you. You just need to turn vegan”
“There is no cure.”
“It is so weird to remember when we used to hang out a few years ago and you were able to do so much more.”
"How long before you are in a wheelchair?”
“No matter what happens, you will be able to adapt because you are a strong resilient person”
“Your attitude in living with MS is inspiring”
“Its okay that you wobble, you have MS!”
“You are going to die, but you aren't going to die from MS”
“It is good that they discovered it early as there are many treatments.”
The Health Activists we spoke to had the following suggestions for having positive conversations with someone with MS:
- Don't always start with MS as first topic of conversation
- Don't expect us to talk about MS all the time—Don't drill us
- Just listen to when we want to talk
- Don't suggest you understand or know how someone feels or compare your experience to someone who has MS
- Learn the terminology so the patient can have a meaningful conversation.
Pharma marketers can use these tips from Health Activists, to foster meaningful dialogue with MS patients without any unintended negative consequences.
Dorothy Wetzel is the founder of healthcare communications agency Extrovertic (www.extrovertic.com).