Yesterday, Julie shared an excellent post, Telling my Kids, in which she describes discussing multiple sclerosis with her children.
"It was shortly after that when I started talking very openly in front of my kids about having MS. It was on my mind a lot so I brought it up a lot. Instead of waiting for the questions, I integrated talk about MS into my conversation. It wasn’t in a complaining way. Instead, I welcomed it into our household instead of holding it at bay. If I didn’t feel like making dinner, I didn’t think twice about saying “Looks like peanut butter and jelly sandwiches on your own tonight.” If I was struggling to understand a rapid-fire, meandering conversation among family members, I would speak up and tell them to slow down."
The National MS Society (NMSS) has created an interactive resource, Keep S’myelin, designed especially for kids (5-12) and their parents to learn about MS in a fun and positive way. New issues are published quarterly. I was having fun the other day just browsing through the available issues online. Good stuff!
_"Keep S’myelin is a colorful, engaging, informative, and reassuring newsletter to help children and their parents talk and learn about MS together. Each issue is filled with stories, interviews, games, and activities that highlight a specific topic related to MS, as well as a special section just for parents." _
A related brochure to share with pre-teen children is Someone You Know Has MS: A Book for Families.
But when it comes to teenagers, let’s face it, there are plenty of normal challenges and stressors, each of which have emotional components. When a parent has multiple sclerosis, the family lives with multiple sclerosis which then becomes just one of the challenges of teen life. The NMSS brochure, When a Parent Has MS: A Teenager’s Guide, "discusses real issues brought up by real teenagers."
It’s true that only those persons who live with the illness truly understand what it is like. This is one reason that patients seek out other patients to discuss what is going on with them. In this booklet, teenagers and young adults discuss their experience and suggest ways of dealing with the effects of having a parent who has MS. Deep emotions of anger, embarrassment, and guilt are discussed, as well as coping strategies to handle minor problems and reminders to take care of yourself.
"It’s normal for everyone in a family to feel angry now and then about the demands that MS creates. It’s normal to feel anger at the illness itself. But sometimes it’s hard to separate the illness from the person who has it."
That was the message delivered in the Beginner’s Guide to MS: To the Caregiver and the MS Patient, to separate the illness from the person – You are NOT your MS!! or in this case --** MS is NOT your Parent and it’s OKAY to be Angry at the MS!!**
A final resource to share with you today comes by way of the Multiple Sclerosis Society of Canada which has developed three separate websites specifically for kids, teens, and parents. Check them out - MS for Kids, MS for Teens, and MS for Parents.
Lots of great information is available, however… keep in mind that there is no rush and children are excellent at pacing their desire to know the answers to life’s questions. Listen with open ears and your children will let you know what they need.
How old were your children when you were diagnosed? Did you tell them right away, wait until they were older, or did you keep it a secret?
Please share your story which may help someone else looking for the same answers.** Lisa Emrich is author of the blog Brass and Ivory: Life with MS and RA and founder of the Carnival of MS Bloggers.**
Lisa Emrich is a patient advocate, accomplished speaker, author of the award-winning blog Brass and Ivory: Life with MS and RA, and founder of the Carnival of MS Bloggers. Lisa uses her experience to educate patients, raise disease awareness, encourage self-advocacy, and support patient-centered research. Lisa frequently works with non-profit organizations and has brought the patient voice to health care conferences and meetings worldwide. Follow Lisa on Facebook, Twitter, and Pinterest.