Supporting your teen with MS: advice from Dr Sally Shaw

Parenting teenagers is already a challenging journey with the ups and downs of adolescence. Puberty, peer pressure, school and career plans are just some of the hurdles parents must navigate during this stage of their child’s life. What happens when this period is further complicated by a diagnosis of multiple sclerosis (MS) and how can parents provide their teen with the support they need?

Dr. Sally Shaw, a psychologist with extensive experience in helping families of teenagers with MS, provides expert guidance on the unique challenges parents face.

First reactions to the diagnosis

Dr. Shaw acknowledges that the biggest initial challenge is to not panic. It is normal to feel shocked and many other strong emotions, particularly during the first few months of the diagnosis.

It's important to give yourself time to process the information. The diagnosis can take weeks, involving a whirlwind of sometimes frightening tests and medical visits. The volume of information can be overwhelming, and it can take many months to adapt to the new changes this diagnosis will bring. It also provides the opportunity to build a supportive team around you and navigate the healthcare systems.

Try to take in all the new information and experiences calmly and listen to what your teenager needs.

Keeping the ship steady

An MS diagnosis is likely to create a great deal of uncertainty for your teenager, and your entire family. Dr. Shaw stresses that parents of teenagers with MS should strive to maintain stability and routines in their family life to help combat the feelings of uncertainty.

This might include:

• Preserving familiar routines and habits, such as enjoying a Friday night takeaway meal as a family
• Having conversations around the dinner table, or
• Continuing to engage in family outings, such as going to the footy or meeting up with family and friends

By actively seeking ways to promote stability within your family, you can help maintain a sense of normalcy in your teenager’s life and bring comfort to their experience of living with MS.

Keeping the lines of communication open

Dr. Shaw emphasises the importance of doing your best to keep the lines of communication open with your teenager, although this can be challenging at times. If you are struggling, it may be worth reaching out for some professional help.

• Adopt a curious approach to your child, by asking them open-ended questions, and actively listening to their experiences.
• Try and understand how they are feeling and what this is like for them from their perspective.

Having this understanding will help create a space for them to express themselves and feel heard by the people closest to them.

Keeping the lines of communication open with other family and friends is also important. These relationships and broader networks are your support system and play a vital role in navigating difficult times.

Embracing your own emotions

Acknowledging your own emotions as a parent is just as necessary as supporting your teenager. Dr. Shaw reminds parents that they, too, are going through a significant life change.

It’s natural to feel sad, overwhelmed, or even frustrated during this experience. Parents can grant themselves permission to feel and process these emotions. While your teenager is going through their own experience, it’s essential to remind yourself that this diagnosis affects you and the entire family as well.

Seek out trusted friends, family members, or professionals who can provide you with valuable emotional support.

Taking care of yourself

When navigating the challenges of supporting a teenager with MS, taking care of yourself is not selfish, it’s a necessity.

Dr. Shaw highlights the significance of self-care, starting with the 'boring,' yet essential, elements like quality sleep, a balanced diet, and regular exercise. She also makes note of the value of mindfulness including moments throughout the day to slow down and check in with yourself.

In recognising that your wellbeing directly impacts your ability to support your teenager, taking care of yourself should be prioritised as part of your daily routine.

Recognising the signs of needing extra support

Being aware of when you need additional support is vital. Dr. Shaw points out signs that may indicate a need for emotional or mental health support.

These signs can include:

• Increased irritability
• Feeling overwhelmed
• Feeling frustrated in other areas of your life

On top of having family and friends to talk to, there are other options for support such as speaking to a counsellor or psychologist, as well as accessing peer support from MS Plus.

Dr. Sally Shaw is a psychologist and head of Focussed Health Psychologyopens in new tab in Melbourne. She specialises in supporting people diagnosed with chronic conditions like multiple sclerosis.

More resources are available in our Carers, Family & Friends Toolkitopens in new tab