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22 Things Parents Should Know About Their Children With Chronic Illness

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It’s often said that parenting is the hardest job of all – so what happens when you’re trying to navigate the whole “parenting thing,” and you discover your child has a chronic illness (or several)?

When a child complains of pain or other symptoms, it can be difficult to know whether it’s a minor issue that will disappear in a few short days or weeks, or early signs of something more serious and long-term. And if your child does get a chronic diagnosis, both of you are likely grappling with a whirlwind of emotions – on top of the physical symptoms your child is experiencing. Knowing how to proceed and best support them may feel like a shot in the dark some days.

That’s why we asked our Mighty community to share what parents should know if they have a child with chronic illness. The following responses come from “children” of all ages – ranging from recently diagnosed teenagers to grown adults who are perhaps parents now themselves. Each has a unique perspective based on their own experiences, but all have shared words of wisdom that can hopefully offer some guidance and encouragement to any moms and dads out there learning how to parent a child with chronic illness.

Here’s what our community shared with us:

  1. If your child says they are experiencing a symptom, especially chronic pain, please believe them. It hurts to not be believed by someone who cares about us. Plus it delays getting a diagnosis or starting treatment.” – Linnéa S.
  2. Drinking more water and going to bed earlier won’t cure the pain, and neither will having a happier outlook.” – Michele A.
  3. Parents need to realize that many children, especially the younger ones, tend to think they have done something wrong… something to deserve the illness. They feel guilty, often apologizing for something like having to make frequent bathroom stops or needing special accommodation (wheelchairs etc.). If a disease flares, after having been in remission, some of us will feel that we have somehow let our parents down or disappointed them, especially if treatment is expensive and parents’ finances are stretched thin. I know; both of my parents have passed on and I still feel the guilt if I have a flare!” – Nancy B.
  4. “Yelling and punishment is not going to motivate someone who is ill.” – Alice C.
  5. Your chronically ill child will experience a myriad of emotions; those emotions are theirs to experience. You cannot rescue them from those feelings, but you can be a safe, judgment-free place for them to go when they need to share.” – Tab M.
  6. “Always make sure to inform teachers individually, because likely, the office staff just thinks there’s another kid faking being sick, and teachers not believing can make it worse.” – Shannon K.P.
  7. Please listen to us when we say something is wrong and actually want to go to the doctor/hospital. We probably aren’t faking it if we want to go.” – Autumn D.
  8. I wish my parents and other family members knew that I’m trying my very best all of the time but with six different chronic illnesses I barely have the energy to get out of bed some days. I also wish my parents understood how much I’ve had to give up due to my chronic illnesses. This includes D1 scholarships for sports and going out of state for college. I didn’t want to give up these opportunities but I had to because my health comes first.” – Brittany T.
  9. It isn’t your fault, and nothing you did could have prevented this. Sometimes we just get sick, and all we need is your support and for you to believe us. No one is to blame and no one should feel guilty; it just happens.” – Bonnie P.
  10. It is so hard to believe them. I know. I wasn’t believed. My family didn’t know any better. I readjusted my setting of normal and still after being diagnosed five years ago, I am discovering things I thought were normal are not actually. Even after my own experience, I am scared to validate it in my children. And I should know better. Are they mimicking what they see in me? Are they being overdramatic, lazy, unfocused? Is this a discipline and work ethic issue or a diagnosis issue? But if it does not relent, follow up, support them, get them medical attention, and don’t give up on them because local doctors dismiss it as growing pains or anxiety, because they will.” – Jennifer C.
  11. “I’m trying my hardest. Every day I put every ounce of effort in to the few things I can do.” – Amy C.
  12. Your child knows their body really well. They know when it’s not working the way it’s supposed to or something is wrong. If they ask you to take them to the doctor or help them get care, be there for them. The more you don’t believe them as a child, the less they will trust you in their care as they move into adulthood and your relationship will suffer.” – Amelia H.
  13. Support and education! It means the world to me when my parents take an interest in my illness… my mom went to all my doctor appointments and clearly that meant a lot to me, but when my dad came to me after doing research on his own time so he better understood, I about broke down in tears. They have each shown it in their own ways, but I know my parents love and care for me because of the time they have spent trying to understand what I experience with my illnesses.” – Bay H.
  14. “As a 40-something-year-old autonomous adult who raised a family of her own and can still think for herself, trying to make any and all decisions for me is inappropriate. I know it can be scary. I know you want to help. But you can’t fix me. It doesn’t work that way.” – Sarah N.
  15. Just because I am younger and a ‘child’ to you does not mean I am healthy. Or lying. I wish it was not real. I feel so guilty looking at all the things they do for me, the medical bills they pay, the chores they do because I can only do so much… I also wish they would not belittle it because they are tired too. Or they hurt too.” – Alexandria B.A.
  16. My mom is my biggest cheerleader and advocate but I wish she let me handle more of my own healthcare when I was a teenager. Trust that you taught your child how to advocate and take over their own healthcare. I got a crash course and a lot of stumbling.” – Susan D.
  17. I needed counseling even though I denied that I did. I needed to learn how to cope with my illness and medical trauma.” – Jenny J.
  18. It’s pretty lonely having a chronic illness as a child, especially when you don’t know anyone your age going through the same thing. I was diagnosed with Graves’ disease when I was 12 years old and my parents were very empathetic. They made me feel comfortable enough to share my symptoms without fear that they would dismiss them. They would ask how I was feeling and comfort me when I wasn’t feeling well. When I told them I wasn’t well enough to do something, they wouldn’t make me do it. I felt heard and understood, and that’s very important for a child with a chronic illness.” – Maddie H.
  19. We need to remember that when our children get frustrated with their illness and lash out at us with harsh words that they don’t actually mean most of what they say – they just need to vent and know they are still loved.” – Claire C.
  20. I want them to know that I couldn’t have done this journey without them. They always believed me and never gave up on finding what is wrong. Parents should know that their kids need to be believed and even if they don’t understand that’s OK.” – Olivia R.
  21. “[Parents should] understand I don’t show them what I really feel. What they see as me cooped up in my room all day isn’t that. I’m in too much pain or am too fatigued to move. I’m not isolating myself. I just don’t speak up [about] how bad I feel and how often.” – Rachel H.
  22. Parent, you’re doing a good job. I know the sleepless nights and endless worry eat you up, along with the guilt and constant ‘why?’ that nags at your soul. Take a deep breath. You got this. Love you.” – Cat L.
Originally published: May 18, 2018
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