Life when your teenager has MS

About 5% of people diagnosed with multiple sclerosis are under the age of 18, usually as teenagers (for clarification, MS is classified as “pediatric” if it occurs in a person younger than 18). As remembered by pretty much every adult, this is a challenging time for virtually everyone, emotionally, socially, mentally and physically. Throwing in a diagnosis of MS can only further complicate matters as a young person is trying to figure out who they are and who they are becoming.

This is a difficult time for parents, as well. For parents of healthy teens, this is a period of learning when to let go, when to be firm and when to compromise. Many teens question their every move, just as their parents question many of the parenting decisions that they make throughout each day. In a study done on parents’ experiences of pediatric MS presented in a session entitled “Parent experience of pediatric multiple sclerosis” at the 2014 Joint ACTRIMS-ECTRIMS Meeting, all of these same dynamics and feelings seem to play out, but in a much more intense way.

Parents are much more cautious: Understandably, parents become extremely protective of a child with a chronic illness. They focus on what the child is doing that may cause them to feel worse, and worry when any symptom worsens. Kids, on the other hand, tend to focus on what they can still do and how to work around limitations. Like virtually every teenager, they want to feel “normal” and have others perceive them as such. This divide between what kids think they can handle and what parents think they can understandably leads to tension between adolescents with MS and their parents.

Parents are more forward-looking than kids: From the moment a person becomes a parent, he or she starts worrying about their child’s future. You look at the tiny infant or the tireless toddler and wonder about what his or her life will be like decades from now. Meanwhile, children are only focused on how they feel at this exact moment.

The study showed that when the child is a teenager with MS, these emotions get amplified in both parties. The parents have a whole new set of worries to contend with, including thoughts of increasing disability and hardship for their children. One woman talked about the sadness and stress that she felt when she saw someone in a wheelchair going to into the same clinic as her daughter, wondering if that was her future. The teenagers with MS in the study took a different approach, tending to “not think about MS” on days that they were feeling good.

Parents deal with their own emotions in various ways: Just as we all find our way in dealing with different situations, parents react in very different ways to their child’s MS diagnosis. Some report feeling emotions along the lines of “Why me? Why my child?” Others turn into activists, becoming involved in their local MS Society chapters and working to raise awareness. Interestingly, many parents reported relief that the final diagnosis was MS, as they had spent the months leading up to diagnosis worrying about potentially fatal diagnoses, such as brain cancer.

Bottom line: Nothing here is too surprising. It just sounds like a very extreme case of teenagers being teenagers, and parents being concerned about their children. Two pieces of advice were offered, however:

  1. Let your teenager do the activities they want. Let them determine what they physically can and cannot do; they will learn to adjust their activities to their abilities and energy levels.
  2. Find support groups for yourselves, as parents, and (separate) groups for your children. It is very important for young people to find others like themselves, and often, nothing helps parents like another parent saying, “I know exactly what you are going through.”
Tags Parenting, Research      4 Appreciate this
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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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    16 Comments

  • Karen   Sep 15, 2014 12:07 PM
    My daughter is in her 1st year of being diagnosed. Why does it take so long? The doctors say up to 5 years usually to make a diagnoses. She has 2 liaisons on her brain, and lost sight in one eye, which has now returned. How is she suppose to live her life with no answers. Where can I purchase your book
  • Rosemarie   Sep 15, 2014 12:33 PM
    My daughter was diagnosed at the age of 15 in 2001. At that time, information and resources were scarce. Much has changed, I see. It would be interesting to see if there are any studies out there for the now adults living with MS since their teenage years! My daughter is doing quite well at this time. She was diagnosed quickly and started on drug therapy. She is now off of the drugs as she wants to start a family.
  • Erin   Sep 15, 2014 1:32 PM
    I was diagnosed about 6 years ago right after my 18th birthday. I found most of this article as far as from the parents' perspective to be true, but for me the diagnosis made me mature a lot faster than a lot of my peers because I realized I had to have a lot more forethought and always be thinking about what is best for my body, having health insurance, etc. I feel that getting diagnosed right before college helped me make a lot of smart decisions such as not partying and drinking but instead focusing on my schoolwork so I was able to graduate early. All depends on personality I guess.
  • Jill   Sep 15, 2014 1:59 PM
    My daughter is now 17, diagnosed 2 years ago. Her last relapse was almost 5 months ago. She just graduated from high school and is 3 weeks into college, and while she's had some challenges, she's positive and moving forward.
    Karen, I would urge you to find a support group - I found Pediatric Multiple Sclerosis Alliance on Facebook, and they have become my second family. Everyone helps each other and all can share your fears and joys.
    Best of luck to your daughter and don't give up hope!!
  • Laurie26  Sep 15, 2014 2:52 PM
    I agree with Jill ...... we have gotten to know so many families that have children diagnosed or waiting for the official diagnosis of MS. We have been on the road you are traveling and can understand !!
  • FORAM GADA   Sep 16, 2014 8:42 AM
    i have got m.s.since last 4 yrs . i have got a small kid. i got this problem after my kid was 1yr old. my parents have really helped me out.
  • FORAM GADA   Sep 16, 2014 8:42 AM
    i have got m.s.since last 4 yrs . i have got a small kid. i got this problem after my kid was 1yr old. my parents have really helped me out.
  • Amy   Sep 16, 2014 7:50 PM
    Karen, My daughter was diagnosed at 16 in 2012. She had many of the same symptoms you are describing. She was diagnosed in about 6 months from the first symptom. I don't know why it would take five years. The neurologist did a spinal for more conclusive results. We did get some odd info from the pediatric neurologist who also admitted this wasn't something she had studied much. We see a neurologist that specializes in MS and that has helped.
  • Amy   Sep 16, 2014 7:51 PM
    Karen, My daughter was diagnosed at 16 in 2012. She had many of the same symptoms you are describing. She was diagnosed in about 6 months from the first symptom. I don't know why it would take five years. The neurologist did a spinal for more conclusive results. We did get some odd info from the pediatric neurologist who also admitted this wasn't something she had studied much. We see a neurologist that specializes in MS and that has helped.
  • Amy   Sep 16, 2014 7:51 PM
    Karen, My daughter was diagnosed at 16 in 2012. She had many of the same symptoms you are describing. She was diagnosed in about 6 months from the first symptom. I don't know why it would take five years. The neurologist did a spinal for more conclusive results. We did get some odd info from the pediatric neurologist who also admitted this wasn't something she had studied much. We see a neurologist that specializes in MS and that has helped.
  • Laura   Sep 18, 2014 8:39 AM
    My daughter was diagnosed at 10 ! She is now 19 and in her 2nd year in the community college. At her last MRI, they actually counted 44 lesions in her brain! She has had 19 rounds of steroids (IV and oral) and is on her 5th modification therapy (Gilenya). We have precautions in place (IEP, wheelchair, etc)
  • Pia Rader   Sep 18, 2014 8:57 AM
    Karen,
    My daughter presented with very similar symptoms two and a half years ago. All MRI scans, as well as the spinal tap were conclusive for MS, but the diagnosis was not confirmed until her next MRI showed new lesions that were not present the first time.
    I wonder if it is the lack of new lesions that makes the doctor unable to set diagnosis? I know there are isolated events, in fact I was praying for that to be the case in our daughter, but only time will tell. Perhaps that's the 5 year span?
    I was also wondering how to find a support group for my daughter. We have both searched on-line, but all we found were parent groups. She is now 17, and with after experiencing some more symptoms is looking for other teenagers with MS to connect with on-line or in person.
  • Avatar
    bigtimechill  Sep 19, 2014 6:34 PM
    I was diagnosed a month after turning 18. I think the most frustrating and hard to handle the way parents deal with the diagnosis (at least for me) was having them want to take care of it all.
    While doctors were running all kinds of tests on me to see what was going on with my body I told myself there was a huge chance I'd have to live with that for a long long time, so I wouldn't ask for anyone's help unless 100% necessary. Disease was more likely to be there for the rest of my life than friends were (diagnose options had been narrowed down to 4 and they were all pretty scary). Having my mom wanting to do EVERYTHING for me from then on was super frustrating, and telling her that I wanted to cope with it for myself at least during the first stages caused her some kind of emotional breakdown, leading her to leave the house for a couple weeks (she said she'd leave forever but I guess something made her change her mind).
    Anyway, everything in this article reminded me of those times, so from my experience this content is very accurate. Thank you for research, Julie.
  • Jill   Sep 28, 2014 1:53 PM
    Pia Rader,
    My daughter joined a teen group on Facebook: Pediatric Multiple Sclerosis: Unite, Believe, Cure.
  • ms.me   Apr 29, 2016 11:54 PM
    New here. My daughter was diagnosed 8 years ago at the age of 24. Just looking to see how other parents are coping with this.
  • Cristin   Mar 3, 2018 8:24 AM
    Hi everyone I am actually a mom currently working with doctors to find out if my daughter has ms. I can not believe how stressful and exhausting it is to try and push these doctor to move on from treating just the symptoms and look at the whole picture. If any of you parents have any great advice it is much appreciated from us. My daughter is 10 years old has always been active and involved with choir, softball, band, church choir, and continued to hold good grades. I just want answers from these doctors of what is happening to her. Last week we actually found out we have 5 family members with me and 3 were diagnosised in their 20s but yet doctors still push looking for seizures when we already know she has epilepsy that is controlled. Help any parent advice would be great.