Help your teenager with MS to thrive

As pretty much all of us who are no longer teenagers can remember, the teen years can be very rocky as young people transition from childhood to young adulthood. Adolescents are often overwhelmed trying to keep up with the regular duties of growing up. A diagnosis of MS forces them to make decisions and actions to adapt to and manage a disease that they will have the rest of their lives, as well as cope with symptoms that are often bizarre and can be debilitating.

Bibi Holge-Hazelton, a Danish nurse who cares for teenagers with chronic illnesses, gave a presentation at ECTRIMS 2013 on some of the considerations and challenges for teenagers living with MS.

One of the few studies on teenagers with MS found the main impacts that MS has among people of this age group include:
  • depression
  • somatization (physical symptoms caused by stress)
  • lower adaptive skills
  • lower self-reliance
  • fatigue
  • poor relationships with parents
  • perceived social stress
In order to help your teenager with MS to flourish, there are certain very important actions you can take:
  • Make sure that your child (not just you as a parent) likes and trusts his or her doctor and health care team. Give your teen the opportunity to speak privately with his or her health care providers.
  • Really listen to what your child has to say, even if you don’t want to hear it. If a teen wants to complain about a symptom, telling them to keep a positive attitude will only serve to make them feel more isolated. Empathize with them. IMPORTANT: Do watch for signs of depression in teens, such as chronic sadness and not participating in activities they used to enjoy. Depression is a common MS symptom, but one that is very treatable. Seek medical help for your teen as soon as you suspect depression.
  • Don’t treat your teenager like an infant. As difficult as it may be, try not to be overprotective. However, do pay attention to any symptoms. It hopefully goes without saying, do not accuse your child of using his or her MS as an excuse to not do something.
  • Help your teen adhere to his or her prescribed medications. While research is still underway on adherence to MS therapies in teens, those with other chronic illnesses are notoriously inconsistent, with 19% of teens with diabetes and 22% of those with asthma taking them consistently and correctly. If your teen is using an injectable medication, be patient. It may take a long time before he or she overcomes any fear of self-injecting.
  • Make sure the information that is provided about MS is meaningful and designed to be helpful. Let the teen process the information at his or her own pace. Teens will often go on the Internet for information, so make sure you’re available to answer questions, dispel incorrect information and help them decipher what they find.
  • The whole family needs to become educated about MS, including siblings. Group counseling may also be a good idea to help everyone get used to the realities of MS.
  • Some teens report losing friends and feeling isolated, due to symptoms that keep them from participating in social activities. Other teens may feel nervous or awkward around a friend with MS. Do your best to get information to other families who are important to your teen.
  • Many teens with MS report that it is extremely helpful to have friends their age who also have MS. Look into support groups in your area or ask your child’s doctor if they might know of another teen your child could talk to. Find appropriate online support groups.
  • It may be difficult for your child to keep up with schoolwork, due to fatigue or cognitive challenges. Talk to the school about accommodations that can be made, such as additional time for tests and reduced homework load (or permission for more time on assignments). Also, try to design schedules around symptoms when possible – for instance, focusing on more difficult subjects during the time when your teen feels less fatigued.
  • Remember to take care of yourself. Maintain a good network of friends. Talk about what you are going through – consider finding a therapist for yourself.
If you are a teen with MS, remember that no parent ever wants his or her child to suffer in any way. Let your parents get used to the idea of your MS, too – you may have to tolerate being asked how you feel many times a day at the beginning. Your parents may worry more than they used to about activities or social outings that you want to participate in. Remind them gently that you need to feel as “normal” as you can. Get ready to endure some extra hugs while your family gets used to your MS and eventually realizes that you are the same person who you were before your diagnosis.
 
Resources:
Pediatric MS Network Support Group 
Kids Get MS Too: A Handbook for Parents Whose Child or Teen has MS 
Managing School-Related Issues: A Guide for Parents with a Child or Teen Living with MS 
Students with MS & the Academic Setting: A Handbook for School Personnel
Your Education Rights as a Student with MS
Pediatric MS Online Support Group
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Julie

Julie Stachowiak, PhD

Julie is the author of the Multiple Sclerosis Manifesto, the winner of the 2009 ForeWord Book of the Year Award in the Health Category. She is an epidemiologist who is also a person living with MS, Julie has an in-depth understanding about current research and scientific developments around MS. She also has first-hand knowledge of the frustrations and anxiety surrounding the disease, as she had MS for at least 15 years before receiving a diagnosis in 2003 and has had several relapses since her diagnosis.

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    5 Comments

  • JJ   Oct 5, 2013 10:59 AM
    THANK YOU!!! It feels like sometimes others do not understand what I have had to go through, especially growing up in high school. College is the best, but I hope that my father will understand that I need air conditioning -- just because he's fine does not mean that I AM. Oh, how the stress has built up >.<
  • Robin   Oct 6, 2013 7:39 AM
    If you make the changes to offset the triggers now, right now, you may have a better MS than you think possible. I have done it from a wheelchair to walking!!

    www.cluestothecause.com
    Clues to the Cause, Questions for a Cure: The Poisons Causing Multiple Sclerosis Worldwide

    I cannot be selfish with the discovery....thank you and yes, get that a/c it matters!!!!!
  • Thomas Boylan   Oct 17, 2013 12:54 PM
    I suffer from Progressive MS and was wondering where I can read the complete article. I am very interested in new treatments and the results that have been reported.

    Thank you
  • Connie Harold   Oct 17, 2013 1:52 PM
    It is wonderful to see that young people with MS now have access to people and resources that help them handle the difficult symptoms and consequences of this disease. When I was growing no one could tell me what was going with my body and mind. It forced me to be very self reliant since nobody believed me or thought I was nuts. I discovered meditation, changed my diet and started doing Hatha yoga. This was forty years ago before anybody but hippies were talking about the mind-body connection. It saved my life and I suggest that kids should check out those types of things for themselves as well as the standard medical therapies.
  • Penina Scullion   Oct 26, 2013 6:48 AM
    Co-incidentally, our HS senior daughter was diagnosed and admitted to the hospital just as ECTRIMS was going on. Thank you for gathering this information and links on teens with MS, it will help us as a family to help her, her friends and her school adapt to this new reality, and hopefully help her go out into the world as an informed and empowered adult!