13 Things Parents May Not Realize They Can Do to Help Their Kids With Chronic Illness
No matter your age, your parents’ response to your chronic illness can have a huge effect on how you cope with it. A supportive parent who fights for you will help you get the best care and make you feel loved and not alone on this journey. And when parents don’t offer the kind of support you need, that just adds another layer of challenges you must climb over as you manage your health.
Since not all parents have gone through the chronic illness experience before their kids became sick, they may not know exactly what they should do to help you. They’re really “learning as they go.” Or maybe they do have a chronic illness themselves, but if their own parents weren’t very supportive they may not know what proper support looks like. This doesn’t mean they don’t want to be supportive! Most parents want to offer support, and they may benefit from suggestions on how to do that well. Chronic illness can be confusing, as everyone in this community knows.
So we asked our Mighty community to share something parents may not realize they can do that would help their kids with chronic illness. If you’re a parent of a chronically ill child, these suggestions can become a guide to giving your child the best support you possibly can. You might already be doing some of these things! If so, know that your child notices — and it really makes a difference.
Here’s what our Mighty community shared with us:
1. Ask your child before sharing his medical information with others.
“Don’t share our medical information with people (that’s our choice to make).” — Candice P.
2. Let your child vent.
“Let us vent, be it to you or, ideally, a therapist as well. Chronic illnesses wear down your spirit and being able to process what you go through helps.” — Amy S.
“Listen, be there, and allow them to speak about their frustrations. Don’t make your child bottle everything up and put on the face you want them to show.” — Emily B.
3. Be your child’s best advocate, even if they’re older.
“Sometimes we need that Mama Bear or Papa Bear to put those claws out and say, ‘Hey look, my kid is trying to tell you something. I don’t care how old they are or how young they are, but they’re telling you something and it’s important…’ Sometimes we need help and sometimes we’re afraid and embarrassed to ask for it. Sometimes the people around us don’t make that any easier. Be a parent. You are always a parent if you have a child. No matter how old or young they are, you’re always a parent. I’m almost 39 years old, I still need my mom I’m not ashamed to admit that.” — Antaris G.
“Answers are hard to find in many areas on chronic condition and because of this, the child or adult is not believed or told it’s anxiety or a mental health issue. They are in a lot of cases left on their own. We need to change these medical opinions/assumptions and as parents, it’s our responsibility to advocate for our children to prevent them being suctioned down the hole of despair. Push those boundary lines back and make health professionals listen.” — Manuela B.
4. Seek out specialists and second opinions immediately.
“Get them evaluated by a specialist as soon as possible, without causing panic or making them feel like a burden. It’s better to go and have it be nothing than to let a problem fester and spiral out of control thinking it’s just ‘growing pains’ or a ‘cry for attention.'” — Doni N.
5. Tell your child they’re not a burden.
“Tell them they’re not a burden. Repeatedly. Reassure them.” — Sonja A.
“Kids know they’re different. And other children can be so cruel, leaving your child with no one else to turn to but you (the parent) be their ally and friend. Let them know they’re not a burden and their differences make them strong and special.” — Lexi S.
6. Don’t let your child’s illness guilt you into treating them a certain way.
“Don’t feel guilty. It’s not your fault your child is ill. Don’t use the illness as a crutch and don’t be manipulated by the illness. Meaning, treat your child as normal as possible. If you would’ve said no before the illness, don’t say yes because of the illness.” — Dani G.
7. Let your child have some independence.
“[Give] us some space. Yes we have chronic illnesses but we know our limits and having even just a little bit of space can do wonders for our confidence.” — Brittany T.
8. Remember the “small comforts.”
“Simple things as a distraction, play with hair, rub back, etc. The small comforts of a parent. [My momma has] even laid on the floor at the doctor’s office with me due to it being long and wanting to ‘support’ me by making me not the only one.” — Breezy N.
“Mom looks after me. Just sit and hold my hand. I so appreciate the care, but I need emotional support more than anything. I just want someone to sit with me.” — Mary-Katherine K.
9. Try and get friends to visit them.
“Encourage friends to come see them. I saw no one. I was in hospital from ages 7-18 and only one friend visited me in that entire time. I sat home alone when I wasn’t in hospital. No one called. No one came to see me. Good thing I discovered music, my Walkman saved me so many times.” — Jax H.
10. Listen and believe them when they talk about their symptoms.
“Believe them when they report symptoms. I was so lucky to have a mother who always believed that there was something wrong and she never stopped looking for answers. At times it seemed likes all she did was take me from doctor to doctor but she never gave up on me.” — Kim S.
“Listen to them. When I was a teen going to doctor after doctor before I finally got diagnosed, my mom aways listened. Never brushed off what I had to say about how I felt, she listened to all of it. I honestly don’t know that I would have a diagnosis if mom hadn’t listened. Love her.” — Vanessa S.
11. Remind them it’s OK if they have to do things differently than other kids.
“Understand what they are going through and don’t hold them to anyone’s standards but their own. They cannot do the same things at the same pace as everyone else all the time. Know that is OK and remind them they are doing great!” — Priscilla G.
12. Listen without feeling the need to always give advice.
“Listen without giving advice. It’s hard as a parent because they want you to feel better but they don’t realize how harmful unsolicited advice can be. ‘If you would just stop eating ___ you’d feel better’ or ‘all those medications you take can’t be helping’ sound like advice when you say them but the message is mostly about blame. In the end acting as though there’s a magic solution and we are just choosing not to try it is the worst thing you can do. Chronic warriors have often already exhausted all of the solutions out there and have found what works and what doesn’t.” — Rachel K.
13. Support the decisions your child makes about their health.
“Looking back on it now, as a mother myself, I can appreciate the strength my parents showed me. They have always been solidly there for me. They made sure I understood the situation and knew my options. But allowed me to make the final decision on what treatments and procedures I would receive. And never once did they make me feel like I made the wrong choice. And even though they were unsure about what my future would look like, they would not let me doubt myself. I don’t even have the words to convey how much their constant support has shaped me.” — Stephanie S.
For more insight into parenting a child with chronic illness, check out these stories: