Tips for Parents: Talking to Kids About Your Relapsing MS

  • by  Barbara E.
  •   October 30, 2017

Barbara E. is a paid employee of Teva Neuroscience, Inc.

I often hear this question from members of the RMS community, “How do I tell my children I have relapsing multiple sclerosis”?

Talking to children about a parent living with RMS can be a tough thing. During the rush of appointments, diagnostic tests, selecting a treatment option and adjusting to life with RMS symptoms, a parent may feel overwhelmed. Many parents with RMS are uncertain about how much information about their diagnosis to share with their family. Often the person who received the diagnosis is hesitant to discuss their health with their children because they don’t want them to be overwhelmed or scared.

Very young children may sense when something is wrong in the family. Older children may overhear bits of adult conversations and let their imaginations fill in the gaps if parents hide their diagnosis, or even their symptoms. When parents with RMS avoid discussing their illness and symptoms with their children, they may find that their children experience anxiety and stress.

When parents with RMS decide to tell their children about their diagnosis, it may help to do some planning ahead of time. Have the conversation when you are feeling well, when you have come to terms with your diagnosis and when your plans for managing your symptoms have been decided. Consider your child’s age and developmental stage when planning how much information to share, and make sure you are prepared to answer any questions they may have.

When the time is right and you are prepared, remember to have confidence in yourself. As you begin talking, follow your child’s lead and answer their questions as they arise. You don’t have to tell them every specific detail about your RMS, but you will want to try and answer their questions. If your child seems to lose interest or their mind wanders during the conversation, that probably means they have absorbed as much as they can at that time. It may be helpful to stop the conversation and remind them that they can come back and ask more questions at any time.

Be prepared for your child’s reaction. Allow them to express their feelings without judgment. Very young children may not have the words to express their feelings and may “act out” their feelings with actions like becoming clingy, whining or trying to relate your situation to that of a favorite character. In helping children deal with their feelings, try to offer as much reassurance as you can.

One last tip is to keep the lines of communication open. Understand that more conversations may be needed after you discuss your RMS diagnosis with your child. Along the way you may decide to enlist some reinforcement to aid in supporting you as you and your child navigate this new state. Teva’s Shared Solutions® MS & Building a Support Network brochure has some helpful tips on building a support network and speaking to your children about RMS. Your partner/spouse, your child’s grandparents, teachers, school nurse and other Care Partners are all viable options worth considering.

It’s your decision when and how to talk to your children about your RMS diagnosis. Do what you think is right and consider taking advantage of the books and resources available.

Comment below if you have tips on explaining relapsing MS to children. Your comment might help someone in a similar situation.

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Barbara E.

Shared Solutions® Nurse

About The Author

Barbara E., RN, BSN, MSCN, is an MS Certified Nurse who works at Teva’s Shared Solutions®. She has been a nurse for 20 + years and has worked with MS patients for 2 years.

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-45269 June 2018

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