MS 101: How to Talk about MS
- by Teva's Lift MS® Team
- March 26, 2018
With an often “invisible” illness like multiple sclerosis, others sometimes cannot see many of the symptoms. This can make it difficult for family, friends and co-workers to understand and relate. Not knowing how others will react to MS-specific news or how supportive they will be can also make things tricky.
That’s why we’ve pulled together a few tips to help make talking about MS with others a little easier.
Decide how much you’re willing to share. Depending on your relationship with the person and how much time you spend with them, you can assess how much they really need to know about your relapsing MS (RMS) diagnosis. Start with a little information you feel they will be able to understand and accept. Proceed with additional information based on their response and interest, at your discretion.
Start with the basics. Explain that MS is a disease where the immune system attacks the central nervous system (CNS), causing internal scar tissue and nerve damage. You can further explain that when the nerves are damaged, it disrupts the body’s ability to send signals from one part of the CNS to another, causing MS symptoms.
Explain what MS is like for you or your loved one. If the person seems interested and concerned, it can help to open up about your own experience with MS.
MS symptoms vary widely from person to person and you can serve as one example. Describe some challenges you face, what they might see, and how that may change from day to day. Also reassure them about the ways MS hasn’t changed you.
Answer questions as honestly and openly as you can. Questions indicate the person is interested and concerned about you, even if voiced with an unknowingly poor choice of words. Questions are your opportunity to advocate for yourself or loved one and raise awareness about MS.
Pick your battles. If someone seems closed to your perspectives or challenges, it may not be worth your energy to try to change his or her mind. Some people may take time to adjust to your news. At the same time, look for opportunities to enlighten these people with additional information, when appropriate.
If they ask, tell them how they can best support you. You’ll find that many people want to help. Let them! Whether that’s lending a hand with laundry or childcare or accompanying you or your loved one to a doctor’s appointment, it may be a relief to both of you to have a caring person nearby.
Ultimately the conversation about MS is up to you—your timing, your comfort level, your need for support. Remember you can always lean on the Lift MS® community for support as well.
What has helped you when talking to others about your experience with MS? How have your conversations helped raise awareness about MS? We hope you will share your story with us in a comment below.
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.