My Child Has A Chronic Illness: What Do I Do Now?

Updated: Feb 8

In todays blog, we are going to discuss some practical ways you can handle dealing with a child with a chronic illness. Having a child with a chronic illness can indeed be difficult, but we are here to help you navigate.


As some of you may know, my chronic illness journey began in 3rd grade. So not only was it my journey, it was also a journey for my parents. Together we have curated a list of things you can do as parents to support your child with a chronic illness.


1) Listen to your child

Regardless of what doctors are saying, listen to your child. Only they know what they are experiencing and feeling on a day to day basis. Until they turn 18, you will be their best advocate. As they are telling you what the are experiencing, keep a journal of the symptoms they mention in case it is not present at the time of doctor appointments.


2) Be patient

The diagnosis process is a long and tedious journey and so are the treatment plans. Some treatments take 6-7 months before they begin to take affect in the body. Patience is going to help you through both processes. Breathe through the frustration of it all and know that you are never alone in the journey. It can be frustrating trying to get answers but don't give up.


3) Validate the moments where there is pain.

There will be moments that your child will be in pain and you wont always understand it. However it is important to validate what they are feeling in that moment. Do not try and force them to "push through the pain" because most days the pain will be unbearable. Instead, sit with them, have a movie night in your pajamas and allow them to rest.


4) Celebrate the good days.

There will be good in the midst of the tough days, learn to celebrate them. However, be careful to not to over do it on these days. Chronic illnesses warriors tend to cram a lot of things in the days they feel good, and then spend days trying to recover. So remind your child to take it easy on these days, even while you celebrate. Find victory even in the small things.


5) Encourage your child to continue with activities/social life, even if accommodations are necessary.

Maintaining a social life while having a chronic illness is imperative to maintaining mental health. Trying to maintain social activities will indeed be difficult, but if there are accommodations that can be made, try them. I often used a wheelchair when I was younger to attend events and important social gatherings on flare days. A few years ago, I also used a wheelchair to navigate SeaWorld while on vacation. Making necessary accommodations will help you not focus solely on limitations.


6) Take some time to relax by yourself.

Your baby is your life, and for the next few years, your life will be devoted to making sure they are ok. Attending doctors appointments, organizing medication, surgeries, ER visits, and day to day life will get stressful. So it is very important that you take a moment for yourself. Take a moment to enjoy lunch or coffee with a friend (outside of your home if you can) to just take a break. Those moments may not come often but scheduling in your routine may help you accomplish them regularly.


It is very important to keep communication open because every child is different.

Check out our free download that you can use to open discussion with your child.


Download your "Questions To Open Conversation with Your Child" Worksheet by CLICKING HERE!


For additional support don't forget to join our discussion forums:

https://www.chronicendurance.org/forum


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