How to Cope When Your Child is Diagnosed with Pediatric MS
Last updated: May 2020
Finding out your child has pediatric MS can lead to many overwhelming emotions. It can be a scary time for both you and your child. However, life with pediatric MS is manageable, and you and your family will be able to navigate things with time and practice.
Big things to remember
Before even beginning to learn how to cope, here are some important facts about pediatric MS to help keep things in perspective:
- Pediatric MS is not deadly, nor a death sentence. Being diagnosed does not mean your child’s life is now over or that they are going to be in a wheelchair.
- Your child can still be a normal, active kid. They can go to school and be physically active, just like everyone else. Pediatric MS is an autoimmune condition and cannot be passed on to others.
- Although there is no cure for pediatric MS, there are several treatment options available. The good news is, we are learning more about pediatric MS every day, and scientists are currently studying new treatments.
- It’s very common for parents to blame themselves or feel guilty about their child’s MS, however, it is not your fault. Experts aren’t sure how exactly kids get MS, but no matter what, it depends on a variety of different things. There is no one thing you or anyone else did to cause this.
With these points in mind, there are several steps you can take to help cope with your child’s pediatric MS diagnosis.
Ask and learn
Knowledge is power, and learning more about pediatric MS may help you feel more comfortable with the condition and its management. You should never feel discouraged to ask questions. This is a scary and confusing time. No question is too big or too small. Even years down the road, you can still always ask questions. Your child’s doctor can help answer any questions you have, and is often a good place to start.
Seek support and reliable information
You can also seek guidance from support groups or the internet. However, one thing to keep in mind is that the internet has an infinite amount of information, and not all of it is correct. Information overload is a real thing, and can happen quickly when browsing the web. Finding reputable groups or organizations with medically reviewed content can help you find accurate information.
Keep open lines of communication
Check-in and keep open lines of communication with your child
Just as you might be feeling overwhelmed and scared, so is your child. You know your child best and what they need. Being honest with them in a way they can understand and process can help alleviate their fears and let them know you’re both on the same team. You can also help them find age-appropriate resources to learn about pediatric MS, and encourage them to come to you with any questions they may have. Keeping your child in the loop and regularly checking-in with them can help them feel supported and more in control of what is going on.
Gather your team
Finding a team of healthcare professionals that you trust and feel comfortable with can help you and your child feel more prepared to navigate this journey. Several large organizations have online tools to help you find doctors or healthcare centers that specialize in pediatric MS care. Your child’s doctor may also recommend other experts, like occupational therapists, speech/language pathologists, social workers, nutritionists, mental health providers, and more.
Work with school administrators if needed
Caring for a child with a chronic illness is a team sport, and the more professionals you can add to your team, the more supported you and your child will be. Many of these experts can be found within the same healthcare system and are covered by insurance. If your child has symptoms that impact their school performance, it’s okay to bring school administrators on board as well. They can help you create an academic plan that is best suited for your child.
Emotional and mental support
Navigating life as the parent of a child with a chronic illness can be challenging, but it can be even harder on your own. Both you and your child may need additional emotional and mental support. Seeking support from a mental health professional (for yourself, your child, or both of you) can be beneficial. This kind of support can come from a variety of places. Mental health professionals can be in a more formal, clinical setting, like a psychologist or psychiatrist, or can be more laid-back in a more informal counseling setting.
Navigating overwhelming emotions
It’s okay to try out different settings or professionals to see who or what style works best for your family. Receiving the news that your child has pediatric MS can bring about with it many overwhelming emotions. While these emotions are normal and should be acknowledged, a mental health professional can help you learn to best navigate these.
You and/or your child can also join a support group. Support groups can be in-person or online (like this one). If you are unsure where to find a support group in your area, a great place to start is with your child’s doctor or another member of their healthcare team. They may be aware of groups in your area that meet regularly.
Although you may feel as though all of your focus needs to be on your child, it’s important to remember that you cannot care for someone else if you aren’t cared for yourself. Taking time to do activities or hobbies you love, exercising regularly, drinking plenty of water, and eating well are all important parts of self-care. Caregivers often experience burnout, and taking care of yourself can help minimize this risk.
Learning your child has pediatric MS can be a stressful and scary experience. However, with education, open communication, a great healthcare team, extra support, and self-care, life may be a little more manageable.1,2
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