What not to say to the parent of a child with a chronic illness

Getting a diagnosis can be scary, but it’s a huge relief for a family whose child has been struggling with chronic illness or mysterious health issues. My own daughter was diagnosed with juvenile arthritis (and was subsequently prescribed a very small dose of chemotherapy she has to undergo once a week via injection).

In some cases, diagnosis brings treatment options that can be hard to bear along for the ride, such as medication with unhappy side effects, painful physical therapy or surgery. Often, the treatment is the only way to prevent (or slow down) permanent damage, and while the side effects of the meds can also cause illness or distress, moms and dads make that choice in a child’s best interest.

Enter “everyone else” into the picture. It can be extremely difficult to hear friends, family members, perfect strangers and even medical professionals second-guess your decision about how to best to treat your child. For some, it’s hard to understand why a parent would choose to use a harsh treatment when a child doesn’t even seem that sick. And yes, as with everything else a parent chooses to do, people judge.

Some of the medications kids have to go on (mine included) carry harsh side effects and potential complications. My girl is on a medication called methotrexate, a type of chemotherapy, and though her dose is small, it can cause nausea, fatigue and mouth sores. It works by calming down her immune system (which is busy attacking her joints), but this means that she’s more prone to illness because her body doesn’t have the same ability to fight off germs that she had before she went on medication. It’s also hard on the liver, and she’s monitored every three months to make sure it’s not being negatively affected (this has happened before and we had to stop treatment for over a month).

Many of the meds prescribed for kids with autoimmune issues have similar side effects and risks. It can be painful for friends and family members to see a child suffering from the side effects, especially when they don’t seem to be all that sick.

Here are some examples of the types of ignorance parents of kids who suffer from juvenile arthritis have had to bear:

• “I went to a pharmacy that does compounding to see if they could compound my 2-year-old’s methotrexate. The pharmacist said, ‘I would not let my employees near that poison!’ and ‘Have you tried a diet change?'” — Michelle
• “I’ve had several people suggest natural remedies to us when I tell them my daughter’s immune system is compromised by her medications. We take this as a teaching moment to let people know we’re actually suppressing her immune system on purpose and that it’s a delicate chemical balance.” — Caty
• “The school nurse told me and my 9-year-old juvenile arthritis daughter that it was very important to get off all of these dangerous meds as soon as possible because of how bad they are for her. This was our first introduction to [this woman.]” — Kristen

Spoiler alert: If you don’t aggressively treat some illnesses, like juvenile arthritis, the child risks permanent damage and disability, which can include joints that need replacing, loss of function, blindness (if the eyes are affected) and becoming wheelchair-dependent. And no one wants to give their child a medication that affects their immune system and can also make them sick, but they do because their immune system is what is causing the problem in the first place.

Here’s what not to say to a parent facing such an ordeal:

• I would not give my child that medication.
• Have you tried going gluten-free? Cutting out sugar? Only feeding him organic food?
• This essential oil should take care of that.
• He doesn’t seem that sick.
• She looks fine to me. Why treat it?
• Well, my doctor said…
• I know someone who had ___ and the ___ made them ___.

Instead, offer to listen — don’t judge — and attempt to understand the illness and its treatment options. If a mom says her child is immunocompromised due to treatment, wash your hands before visiting, and don’t go around them when you’re sick.

Also, respect a parent’s wishes if their child is sticking to a certain diet because it helps her feel better (because some parents report their child has improvement on certain diets), and definitely don’t sneak them snacks they shouldn’t have (which, unfortunately does happen because some people don’t see the harm).

It’s crucial to understand that a parent has already weighed the pros and cons, and if they’re not asking you for advice, you probably shouldn’t give it. While it really is wonderful that you’re concerned for the child’s health, rest assured that her parents are as well, and they’re doing what they feel is best for their family.