How To Support Chronically Ill Children

By Anatta (Anna) Zarchi

Parenting is full of unforeseen challenges, and one that many may not be prepared for is caring for a child with chronic illness. Being diagnosed with a chronic illness is a type of grief that a lot of people may not understand—a grief that comes not from losing others, but from losing oneself and life as you once knew it to be. And although symptoms can be managed and remission is possible, the initial shock can be extremely painful, with feelings of denial and a loss of purpose and identity. Knowing that even if symptoms go away they may return can be extremely difficult to deal with. 

As someone with a chronic illness, I have experienced this personally, and I have also seen the emotional toll it takes on parents who see their child’s grief but are unable to make it better. So how can you help? How can you be there for your children emotionally and support them as they navigate their grief and treatment, and reach acceptance?

How presence helps children navigate grief

It’s tough to be there for someone in a way that really helps when you know that there’s nothing you can do to solve their problems. I’ve come to realize that in situations like this, the best way to be there for someone is simply to be there. In my experience, the best thing my parents did for me in my hardest moments was just to be with me. There is no need to say anything because sometimes words can’t make it better. However, if your child reaches out to you, you can sit with them, hold them, and be with them, even if there’s nothing to say. 

While you may feel the need to reassure them by saying that they will get better, this is not always as comforting as you might think, especially not in the first stages of grief. This is something I’ve seen a lot of chronically ill teenagers talk about online, and I can relate to it as well. 

Instead, you can let them know that you will be with them every step of the way, that this is not something they have to navigate on their own. You will help them find the best treatment or lifestyle that works for them, you will be there at their appointments, and you will find a way together. This is very important as people dealing with chronic illness, especially in the early stages, may feel lost and isolated. You cannot share their pain, but you can provide reassurance that you will not leave them to deal with it on their own. 

Counselor Savinee adds that it is also helpful to validate their emotions and to listen actively. If they tell you that they feel scared, you might say, “I understand why you feel that way. I would also be scared.” This reassures them that it isn’t wrong to feel what they feel. On the other hand, saying, “there’s nothing to be scared of”, even if it’s meant to be reassuring, can make them feel like they’re not being heard or understood, or that there is something wrong about the emotions they’re feeling. As they talk, you could answer at intervals, summarizing what they’ve said and actively responding to show that you are listening. 

Finding strength in shared experiences

Once they have become more familiar with their condition, or they are feeling more emotionally steady, it can be more appropriate to bring up positives, such as treatments going well, or them being able to do certain things that they thought they wouldn’t be able to do again. This can be especially empowering coming from other people with the same condition. This could be through support groups, whether online or in-person, or by looking up people with the same condition on social media. Helping them find a community of people whose experiences and stories—whether stories of pain or hope—they can relate to may help them feel less alone. Painful stories can help them feel less alone because it shows that there are other people who have gone through the same things; hopeful stories that come specifically from this community can feel more tangible than hearing it from others. For me, seeing that remission was possible from other people with the same illness made me feel less alone, while hearing it from friends and family did not have the same effect because they hadn’t experienced it themselves. 

Taking small wins

Assuming the worst is often a coping mechanism—many people do not yet want to believe that things can be better, because if symptoms don’t improve, the disappointment can be very painful. I’ve also felt like this, and it took me a year to realize that it will hurt regardless of whether I am prepared for it or not, so I might as well let myself experience any small wins or joys that I can. This doesn’t mean that this realization will eliminate negative emotions forever; the process of healing is far from linear. There will still undoubtedly be moments of fear, but those moments of acceptance can bring a lot of relief, no matter how brief. 

As a parent, if you see that they are ready to do things and enjoy themselves, it’s great to encourage them and help them learn how to balance enjoyable activities with any health risks. It is understandable to feel scared that they will overdo it and cause themselves pain, but if they want to do something and they feel up to it, then that is a great sign mentally. For example, if fatigue is a main symptom, you can help them figure out what activities they want to do and for how long they can do these activities without triggering symptoms. Or if they can no longer do certain activities in the way they used to, you could help them find a way to adapt. 

Getting professional help

Personally, I found that getting professional mental health support made a big difference. If your child is struggling, you could gently suggest counseling as a possible resource. Having parents that understand mental health and don’t view counseling as taboo also makes it easier for children to ask for help. And, very importantly, if your child seeks counseling, respect their confidentiality and allow them to share what they are comfortable with. Parents are sometimes, understandably, concerned, and would like more details, whether from the counselor or the child. However, counselors are not allowed to share information on what is said in sessions except in emergencies or to give general updates for young children. Letting children confide in you when they are ready, without pressing for details, can increase their trust in you. 

Finally, despite your best efforts, you may feel like you’re not doing enough—that it’s not enough to just be there for them, that you wish you could do more. But remember that you are doing your best in a difficult situation, and that even though just being there may not seem like a lot, it often means more than anything. 

About the Author

Anna works for New Counseling Service (NCS), an internationally recognized mental health center in Bangkok with a diverse team of licensed counselors. NCS has provided counseling services in Thailand and surrounding regions for over 20 years, with therapists specializing in a wide variety of issues such as anxiety, depression, work stress, relationships, and more. For more information visit: ncsbkk.com/ncs/