MS 101: How to Talk about MS

  • by Teva's Lift MS Team
  •   August 22, 2016

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 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.

For more in-depth information, point them to the National MS Society (NMSS) or Multiple Sclerosis Association of America (MSAA) websites, or ask them to join you for one of Teva’s informational events.

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.

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21 Comment(s)
  • Gayla Miller  | August 22, 2016
    Great up lefting article.
    • Teva's Lift MS Team | August 23, 2016
      Gayla, it’s great to hear you enjoy the community we’ve built here! We welcome your contributions to it.
  • LaVelle  | August 22, 2016
    I need a new power chair please I can't walk and I have my walker but it's getting to hard to walk please help me get my new power chair in Jesus name AMEN Blessings please
  • Cordy | August 23, 2016
    I would like more info. On MS. Please, my grandson has it and lives alone. Can you mail me something so I can find out more about it.
    • Teva's Lift MS Team | September 13, 2016
      Hi Cordy, continue to check back with Teva's Lift MS team as our blog offers a lot of information about RRMS.

      Also, the National MS Society and the Multiple Sclerosis Association of America websites are filled with information about MS. You can check out their sites here: http://www.nationalmssociety.org/ and here: http://mymsaa.org/.

      We hope you find the information you are looking for! Remember, it is always a good idea to seek advice from your grandson's healthcare team if you have specific questions about his experience.
  • Veda | August 30, 2016
    This is so helpful!!
  • Tonya | September 01, 2016
    My husband and family are very supportive with me and the ms stiff thank God for them
    • Teva's Lift MS Team | September 02, 2016
      That’s great to hear, Tonya! Having the support from family and friends can make all the difference.
  • Esther | April 15, 2017
    My family thinks I can just get up and start walking. I tell them the damage this disease is causing my legs. My dad doesn't really want to know about me. We are not as close as my other sisters are with my dad. Kinda sad.
    • Teva's Lift MS Team | April 17, 2017
      It sounds like you and your family have been through a lot, Esther. Please check in whenever you need a lift.
  • Pamela. Espinoza | April 18, 2017
    I. Would. Like. To. Learn. More. About. Ms. Because. I. Have. It.
  • John | April 23, 2017
    Thanks
  • Robert | May 03, 2017
    I have lived with MS for fourty+years.U listen to yourbody.hot wheather is not for me
  • Songaya S. Williams | May 11, 2017
    This article was informative and uplifting.
    Hopefully one day they can advance in the study of MS and find a cure in the near future.
  • Candace Carpenter | May 14, 2017
    Invisible MS is a blessing and a curse! I don't need any aids so I don't have to worry about access.
    Sometimes people think I'm being lazy because I don't jump up to help. I know my strengths​ and weakness! If they need something fast I'm the wrong person! No speed here!
  • Candy | May 21, 2017
    Your tips about the conversation about MS was good My husband has had MS for 17 yrs. Lots of peaks and valleys. But his attitude is good and that's helpful!
    • Teva's Lift MS Team | May 22, 2017
      That’s great to hear, Candy. We hope you'll enjoy reading more of the posts featured on the blog. Let us know what you think!
  • Kathy Caywood | May 28, 2017
    It is very hard to talk about having MS. I have had it for more than 25 years. My doctor found it just by chance, I went in too see her after a very painful night of trying to sleep with bone crushing pain in my limbs I had my first MRI in since 1972. I have MS . I am now in a wheelchair but I am still breathing and going too PT to keep from becoming atrophied.
    • Teva's Lift MS Team | May 29, 2017
      Thanks for sharing, Kathy. Best wishes!
  • Darlene | June 13, 2017
    I want to talk to MS patients that are dealing with weak legs. I feel good but after 15 minutes on my feet I have rest. I start breathing heavy.
  • Lisa | July 17, 2017
    MS is so misunderstood by those who don't have it..Thank You For Helping our voices be heard!!! 💖
    • Teva's Lift MS Team | July 17, 2017
      We love hearing that you like us, Lisa!
  • Chris | July 19, 2017
    When i speak with males , about my wife's ms, I tell them that ms is like electrical wiring that has been stripped of its insulation. It seems that they have an easier time understanding
    • Teva's Lift MS Team | July 20, 2017
      We loved hearing your perspective as a Care Partner, Chris. We hope you come back often and share.
  • Lisa | August 01, 2017
    I was diagnosed with ms 2years ago I was depressed and anxious about the possibility of not working and walking again I seen the future of this Ms thanks for listening 😂
    • Teva's Lift MS Team | August 01, 2017
      If you’d like to further connect, we recommend visiting Teva’s Lift MS Facebook page at https://www.facebook.com/liftms. There, you can find a community filled with MS patients and Care Partners that may give you a lift in your day.
  • Tami  | August 03, 2017
    I'm 51. I've had MS for 17 yrs. The hardest part of this disease is the couch has become my best friend in the last 2 years. I was always very active in sports since I was a kid. Everything has been taken away from me. When I have the energy to mow the lawn or try anything physical, the spasms in my hips and legs are too unbearable. I've gained 50lbs. I HATE this disease!!!
    • Teva's Lift MS Team | August 04, 2017
      Sometimes it can be difficult to stay positive, Tami. We are here to give you a lift if you ever need it.
  • Vern Meredith | August 22, 2017
    I came down with MS 8 years ago. I have had no problem telling people I have MS, even though I show no outward signs of it....YET. I figured that if that day came that I was in a wheelchair or needed other assistance, that my friends etc. would not be shocked or wonder what happened. The heat, temperature over 85 degrees, beats me up for sure and odd as it may sound I can't wait for winter!
    • Teva's Lift MS Team | August 23, 2017
      Please keep us posted on your progress, Vern. We’ll be thinking of you.
  • Ernie | September 11, 2017
    I have a free power chair it was my wife who past away in march
  • Sherri | September 15, 2017
    It seems that strangers or people I don't know well are most interested in my condition I answer questions when asked but I keep things as simple as I can