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.
Malinda parent of a teen with MS“It was really tricky to work out what was MS and what was teen behaviour … (We had to) try to work out what was a new normal."
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:
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.
Having this understanding will help create a space for them to express themselves and feel heard by the people closest to them.
Malinda parent of a teen with MS“Communication and teamwork … is really, really important.”
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.
Malinda parent of a teen with MS“While the teen is the one that has MS, the family lives with MS.”
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.
Malinda parent of a teen with MS“Self-care is critical … And that can be whatever you want … I just advocate that you do it, fill your soul with whatever makes you happy and is good for you … do it regularly and don’t feel guilty about it.”
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:
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.
Malinda parent of a teen with MS“It was very important that I developed a support network for myself. I found a really great psychologist that I could talk to. I have a great supportive group of friends that I could release all my emotions to”
Dr. Sally Shaw is a psychologist and head of Focussed Health Psychology in Melbourne. She specialises in supporting people diagnosed with chronic conditions like multiple sclerosis.
More resources are available in our Carers, Family & Friends Toolkit
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