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How to talk to your teens about MS

By Matt Cavallo

I’m going through a transition at home right now. I have two teenage sons and my youngest son, who is fourteen, just graduated eighth grade and will be starting high school with his brother in the fall. My oldest is going to be a junior. The next couple of years are going to be spent looking at colleges and planning for his future. 

Those of you who read my articles know that I believe, in some ways, multiple sclerosis has made me a better father because I am so afraid of what effect the next MS relapse might have on me. Unfortunately, my sons have vivid memories of a very traumatic relapse I experienced when they were in kindergarten and second grade. That experience caused me to feel a lot of parental guilt because I didn’t want my sons to worry about their dad. At the time, my wife and I shared limited, age-appropriate information to keep their lives as normal as possible and not cause them any additional stress. Now that they are both older, we have had many in-depth conversations about my relapse and their experiences during that time.  

As my sons grow up, my role as a father continues to evolve and change with the times. They have much more independence now and have developed their own views of the world. They also have easy access to a tremendous amount of information and have different questions now about MS and my patient journey than they did when they were younger. Because of this, the types of conversations we have now about MS have also changed. 

I previously wrote an article about talking to your kids about MS where I shared some Do’s and Don’ts about talking to kids about MS. You are now talking to a young adult who needs information conveyed to them in a different way.

Teen Parenting Do’s and Don’ts
  • Do use your MS as a way to talk with your teen about self-care and healthy habits. Make self-care a family affair. Emphasize the importance of self-care in your life and how it helps you manage your MS and overall health.  
  • Do share with your teen the facts about MS. Having an honest conversation about the disease, symptoms you experience, what a relapse is and your treatment plan can help your teen understand how the disease affects you.
  • Do ask for age-appropriate help from your teen with household chores. Having chores and responsibilities around the house is a great way to teach teens life skills. Make sure that time spent on chores does not interfere, however, with their education, extracurricular activities, or social life. Teens should also never be asked to help a parent with personal care, such as toileting or bathing.
  • Do allow teens to openly express their emotions surrounding your disease. It is common for teens to feel fear, anger, sadness, frustration or embarrassment about a parent’s MS. Giving them a safe space to express those emotions and help them find heathy coping strategies is important for their mental health.
  • Do ask your teen open-ended questions about their feelings surrounding your MS. If you ask your teen questions such as, “Are you feeling okay?,” you are more likely to get yes or no responses and they may be less likely to open up and share their true feelings. 
  • Do encourage your teen to ask you questions about your MS. Treat questions respectfully, even if they seem off-topic. If you don't know the answer, say so and offer to find out the information.
  • Don’t depend on your teens for adult tasks or for adult relationships. No matter how mature your teenager is, they are not adults. Never make your teen assume the role as your caretaker or as a “parent” to their siblings.
  • Don’t ever ask your teen to miss school because of your illness. School should be their first priority and consistent attendance is essential to their learning.
  • Don’t be afraid to seek professional help from a counselor or family therapist if you are concerned about your teen in any way.