MS 101: Explaining MS to Others

  • by  Andrea L.
  •   September 02, 2019

Andrea L. is a paid Advocate for Teva Neuroscience, Inc.

“But you don’t look sick.”

Have you ever heard that phrase? Occasionally, I hear it when I tell someone for the first time that I’m living with relapsing remitting multiple sclerosis (RRMS). Often, patients with MS don’t “look sick” on the outside, so others may not be aware we’re dealing with a number of very serious symptoms and health issues on the inside.

It may be helpful to remember that explaining MS to someone for the first time can be overwhelming to them. Without knowing that MS is an unpredictable and individualized disease that can have invisible symptoms, people hear the words “multiple sclerosis” and make numerous assumptions about your MS.

To help educate others about how MS affects everyone differently, I’ve found it’s impactful to describe how MS affects you and explain that there are many aspects of the disease that are hidden.

When someone tells me that I don’t look sick, first, I thank them. Then I explain to them what they don’t see in my MS fight:

  • I battle fatigue every day. Fatigue can be invisible to others but debilitating to MS patients, affecting day-to-day activities.
  • I consider my MS when my family and I plan our vacations. The sun’s heat is a common trigger for symptoms, often leaving me fatigued and weak.
  • You probably wouldn’t think motor skills would be affected, but patients like me are constantly reminded how MS can impact everyday activities like walking, driving, eating, and getting dressed.
  • I’m fighting as hard as I can, every day, to manage my MS by taking care of myself, staying committed to my therapy, and seeing my doctors regularly.

After living with MS for over 25 years, I’ve found that the best way for me to explain MS to someone else is by making it personal. Don’t worry about trying to explain what MS is. Leave that to the doctors. You’ll find a much stronger connection with friends, family, and even someone you just met by explaining what MS means to you.

Above all, be real. Tell them how you’re scared sometimes. Tell them how you’re in pain sometimes. Tell them what they don’t see. That will help them see MS more clearly through your eyes and help you build stronger, more positive relationships.

Hear more from Andrea and others living with MS by signing up for our blog. Join in the conversation on the Lift MS® Facebook page.

Andrea L.

RRMS Patient

COPAXONE® (glatiramer acetate injection) is a prescription medicine that is used to treat relapsing forms of multiple sclerosis (MS), to include clinically isolated syndrome, relapsing-remitting disease, and active secondary progressive disease, in adults.

Do not use COPAXONE® if you are allergic to glatiramer acetate or mannitol.

See Important Safety Information below and full Prescribing Information for Copaxone® (glatiramer acetate Injection).

COP-45679 January 2019

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