It is a fine line as a caregiver that we walk when taking care of our MS patients. It becomes a lot more apparent when we are caring for our teenagers. I feel that teenagers have the hardest job accepting their MS diagnosis than do other age groups, including young children. All teens just want to be like everyone else with normal teenager problems. This new life of theirs of living with MS magnifies this time of year, when school is back in session accompanied by all of the extracurricular activities. How we decide when to interfere or let them handle situations themselves is not easily decided. We want to have our teens learn to become independent adults, but the added stress of life with MS makes us want to do more for them than we probably should.
As we are shifting from the carefree summer life to the fall routines, it is a strong reminder to our teens that they are not the same as their friends and never will be again. As caregivers, we are not only taking care of their medical needs, but also their psychological ones as well. For the most part our kids are very strong when living with their MS, but ultimately there will be major meltdowns. The reality of living with a lifelong chronic disease is often overwhelming for anyone. As a Mom or Dad, it is our job to help them to try to accept “it is what it is” without breaking down ourselves. It is very important for outside counseling to be involved as it is our job to be Mom and Dad and not the psychologist. We are hardly objective as our hearts are breaking as much as our child’s. Mom and Dad are the easiest target for the teen or young adult to lash out at when their MS is overwhelming, which is why an objective counselor will benefit everyone in the family.
A little bit about me...I am a MS Caregiver for my daughter, who has had MS symptoms since she was 10 years old. Pediatric MS was rarely recognized in 1999 when we began our MS Journey. 14 years later, I am passionate about finding ways for other families to connect with each other as we are forced to confront this chronic illness. I find a lot of support thanks to the internet and a Facebook group Pediatric MS Alliance. From this group, I have met many families from around the world that are also feeling isolated. From this Facebook group, we have formed the website www.pediatricms.org and are in the process of obtaining nonprofit status, with the goal of connecting families in person as well as informing families of activities and information designed for the pediatric MS patient.