When a child is very sick, we naturally feel anxious for them and their family. Most of us have no idea what to say, so we blurt out the first thing that pops into our head. If we can’t regulate our own anxiety and tolerate our heartache, we end up saying and doing things we may regret. We need to remain calm and think carefully about how we can best support the child and family. Otherwise, we end up saying mindless clichés, hurtful comments, adding to the family’s stress.
Most families with a seriously ill child say that the number one thing that helped them get through this difficult time in their life was the support of family and friends. Saying things to them like this helps: “If you feel like talking, I’m here to listen.” This doesn’t pressure them to share right then and there, but they may take you up on the offer when they are ready to talk. If a family member with a seriously ill child chooses to share with you, listen attentively and be mindful not to overburden him or her with your own feelings or questions. Don’t drown out your anxiety with chatter. You can show support without saying a word. Your attentive presence is the often the best support. Your body and facial expressions can convey a message of care and support. If you keep eye contact, listen attentively, and avoid distractions and interruptions, this family will have a much better experience than they’re used to. This demonstrates that you are present for them and can handle the pain and anxiety of their situation enough to be helpful.
Without a doubt your intention is to support the sick child and family. But platitudes like “Everything happens for a reason” or “ It could be worse” are often said in order to lessen your own anxiety. Unsure what to say, you might fall back on chirpy, feel-good statements like “Everything will be ok.” But you haven’t seen the blood test results! That may not be what the doctor is saying. The simple truth is, unless you are the child’s medical professional, it is best to say nothing about their medical condition.
We have no way of knowing if the child will be ok. A statement like, “It could be worse” sounds like an empty and often disrespectful cliché. In fact, you unknowingly create a sense of mistrust with such statements. It’s no consolation to the family because they often believe it is the worst possible situation or at least they know you have no idea what is the truth. This ends up making the parents feel dismissed and not heard. What the child or family really wants to hear is that you are going to be there and support them through the good times and difficult times.
Furthermore, don’t ask, “What can I do to help?” This puts the burden back on the family, and asking for help could make them feel uncomfortable or even vulnerable. Instead, propose doing a particular task for the family you think might save them precious time: offer to pick up medications, bring over a meal, babysit the other children or grocery shop. This will lighten their load and let the family know they are not alone in this difficult time.
It is important not to say, “I know just how you feel” because the truth is you don’t know. This statement is an automatic reflex for many of us with someone going through a rough time. We say it out of the best of intentions in order to demonstrate our compassion and our sense of having been there. In addition, it helps to calm our own anxiety. But unless we’ve had a child with the same illness, it can be upsetting to the patient and family to suggest we know what they’re going through. It’s like telling them we don’t need to hear what they’re going through, because their problems aren’t unique to them. This can actually increase the family’s sense of isolation.
A more acceptable thing to say is, “I can only imagine what you’re feeling.” If someone is sad, show that you heard they are sad. If they are happy, share their joy. Listen to their stories of success and disappointment. If they are happy that this is the last chemo, celebrate with them. If they are upset about more radiation, hear them out, but don’t try to change their mood. Be present and attentive so they know they are not going through this alone.
It is equally difficult for families with seriously ill children to hear, “Try and stay positive” or, “Relax and avoid stress.” Don’t pressure families to practice positive thinking. This often implies that they have caused or worsened the illness by their negative thinking. Families hear so much about “mind over body,” but it is important not add to their anxiety by suggesting that. There are days when a patient and family do not feel positive at all, and you certainly don’t want them worrying that they are sabotaging their child’s chances of recovery. The last thing you want to do is to cause them more anxiety about having fears, or make them feel guilty for not feeling happy. In truth, the more you simply listen to a family, the calmer and more supported they will feel.
Finally and very importantly, don’t suggest treatments or interventions. “Did you try that mango cream that I read about on the Internet?” Don’t share tips for miracle tonics, Vietnamese herbs or Swedish visualization exercises that you believe will help the child heal. This can create tremendous disappointments if they don’t help. In addition, the remedy may be contraindicated with the medications already prescribed by the medical doctor. It is better to let the doctors do the prescribing and simply listen to the family talk about the treatment that their child is undergoing. Your job, and an important one, is to be a supportive friend to the child and their family.