A guest blog by Katie Brind’Amour, MS
One of the most popular new rallying cries around disease activism efforts involves redefining the idea of having a disease. The focus is on defining oneself as separate from and in ownership of a condition—not someone bound and limited by a disease, but someone in control and unwilling to let diseases define an identity and a life.
This, to me, seems like a recipe for a life well lived. Language is, after all, a very powerful thing. To describe oneself as “wheelchair-bound” is to verbally ascribe a limiting power to a wheelchair. If you do not feel “bound,” though, why use that term? If you do not want to feel bound simply because others describe it so, why use the phrase? Instead, describing oneself as a user of a wheelchair recreates the situation, putting the person in the spotlight as the actor and key subject—not the person’s “limitation.”
Disease activism efforts encourage individuals to say, “I have [insert condition name here], it does not have me.” Simply to say that sentence is to instill in yourself a sense of dignity, confidence, and self-worth. It serves as a reminder that the person is the central matter of importance in any diagnosis situation—not the disease. Wherever medicine and treatment and activism end up, they ought to start by being centered around the people who truly are at the heart of the issue. After all, diseases themselves wouldn’t matter if there weren’t people involved to care about, to work for, to heal, to support, and to inspire.
The Many Faces of MS
I think another concept that interests me about chronic disease activism (and that drives the above points home) is seeing how diverse any given disease community is. The population of people with MS may be skewed toward certain demographics over others, but each individual with MS is entirely unique.
Demyelination may affect one person’s nerves just as severely as another’s in the medical sense of the word, but the effect of MS on each individual’s life is as varied as the people with the diagnosis. Healthline’s most creative images of MS in the body may demonstrate the artistic progression of the condition, but the similarities in inner disease workings can’t even hint at the variety of outward manifestations of MS. There are as many faces of MS as there are individuals with the condition, and this is something to be celebrated!
Variety among individuals with MS is a wonderful message; it means that no matter the common impact of MS—the pain, confusion, fatigue, and so on—it can’t take away individuality, personality, or the unique hold on life of those it affects. MS can’t erase your sense of humor or rob you of your personal goals, even if it can throw a few hurdles in the way. MS can’t take your inner joy, your faith, or your passion for crazy movies and great Mexican food. No matter how hard it tries, MS can’t keep you from making the most of your life, because MS is not your life. Independence exists in a very real way when you really believe the popular statement, “I have MS—MS does not have me!”
Katie Brind’Amour, MS, is a Certified Health Education Specialist and freelance health and wellness writer. Her work has been published on sites such as WomensHealthcareTopics.com and Healthline.com. She enjoys helping individuals with chronic conditions find practical ways to improve their lives. In her “spare” time, she is chipping away at a PhD in Health Services Policy and Management.
The views, endorsements, and opinions of the guest blogger do not necessarily reflect the views of the National MS Society. If you would like to be a guest blogger, please email Rich Walburg.