What to say to parents of sick children

Atheist families often have unique needs when it comes to healthcare.  Case in point: How to help children deal with illness.

DK Seattle asked me to comment on what to say to a mom whose an atheist when her child is sick & born that way? When someone’s child is born with genetic illness andthey are an atheist,  they at times don’t want to hear I am going to pray about this.

My son has genetic problems and health issues that he was born with. They weren’t too severe, but we have heard – I’ll pray for you quite a bit.  I always try to translate that statement into something secular, like – this person cares about me and my child. They can’t really help, so they are expressing sympathy and hope in the language they are most familiar with.

The problem with that is that the receiving parent or child may not be emotionally able to translate and it sometimes is very hurtful.  Unintentionally so, but still. Parents with sick children need support. And we should all be striving to support families in the way they need to be supported.

So what can you say instead?  A simple, “I’m so sorry that you and your family and your child have to deal with this. What do the doctors and scientists say about the prognosis for your child’s condition?”   Add in a, “Is there anything I can help you with” for good measure and you will have just expressed your sympathy and concern in a way that is consistent with the beliefs and values of the family involved.

Let’s take the 3 sentences of this statement in turn to understand why a non-religious/atheist/humanist family will appreciate this more than “I’ll pray for you.”

 “I’m sorry you and your family and your child have to deal with this.” 

 If a child has a genetic condition, it isn’t something that can be wished away. It must be dealt with. It’s not a choice. Praying isn’t going to change the reality this child and their family faces. The condition is still going to be there. Acknowledging that reality is helpful. It expresses sympathy in a way that tells the family – you get it. What is happening is difficult and hard and it would be nice if they didn’t have to deal with it but they do.

“What do the doctors and scientists say about the prognosis for your child’s condition?”

A child with a genetic condition or illness is going to be helped by doctors and scientists.  And again, acknowledging the real work that is being done and will be done to help the child, helps.  Every parent has fears. They are bombarded with conflicting information about how to best help their child. Even skeptic parents have to sort through all the information and misinformation that is out there. A comment about the importance of the child’s professional care team and the scientists who have studied the condition so that the care team can provide the best care for the child is absolutely welcome. It grounds the statement of support in reality and focuses on the very real concerns the parent has. “I’ll pray for you” does none of that and makes it seem like you aren’t interested in or concerned in what the child and family will be going through to care for the child. Parents with sick children sometimes need to vent. This question allows them to vent if they need to and helps them sort through their concerns about the care at the same time.  The final thing this does is it expresses hope that the child can be helped.  I’ll pray for you is hope they can get better, but also an admission that they probably can’t be helped. It can be a very demoralizing thing to say to an atheist parent.

Is there anything I can help you with?

Depending on the nature of the illness, the parents may have to spend a LOT of time at the hospital with their sick child. Helping with food, or house cleaning or errands or babysitting the other children, other practical things will the parents of the sick child keep their lives together while they help their sick child. And if they don’t need help they will still appreciate the offer. Telling someone you are going to pray for them is a way of saying, I’m concerned, but I’m not actually willing to give my time to help you. It’s nice to know people care, but it’s nicer to know you have a support network to pick up your slack if you need it.

Boundaries

Creating boundaries are important when dealing with someone with a mental health issue.  It’s what allows you to be compassionate and supportive without getting hurt yourself.

I was asked about how to create boundaries with someone who has borderline personality disorder.  This individual loves her husband, but, his mental health problems create emotionally destructive challenges for her.

The first thing to do when trying to be supportive but needing to create boundaries is to better understand the condition. Just as knowing my son has loose ligaments in his body helps us adjust his physical activity so he can play without getting hurt, understanding what is happening with a mental health problem helps us create boundaries to protect ourselves so that we CAN be supportive. Knowing what a person can or cannot control in terms of their behavior helps us to step away without anger when they are behaving in a way that hurts us or causes harm so that we can protect ourselves as necessary.

According to psych central: people with borderline personality disorder have abandonment issues, unstable intense relationships where they idealize and then dehumanize their partner. They also tend to have unstable self-image problems (probably related to the abandonment issues) and self damaging impulsivity problems.  See: http://psychcentral.com/lib/characteristics-of-borderline-personality-disorder/ for a fuller description.

What my friend wanted to know was how she can deal with her partner’s clinginess and dangerous impulses. My advice to her was that the clinginess has to be dealt with first as that is the most damaging to the person dealing with someone like this. Being restricted from having friends and a life outside the relationship prevents the caregiver from taking care of themselves. The challenge is to find a way to help the spouse feel secure while also making sure you take care of yourself. Knowing that you being away create anxiety, perhaps she can create a check in schedule with the spouse when she is away. This changes the dynamic from – he is checking up on me and controlling me, to me helping him to feel secure since that is something he struggles with and can’t really control.

The challenge with creating the boundary is where to put it so that hopefully both partners will get their needs met. But the boundary has to be put where the person who needs to create a boundary needs it to be placed. You cannot ever totally satisfy someone who is insecure and anxious and you should not try to. Should you create reasonable accommodations? Yes. Allow them to control you? No.

The point of a boundary is to create space between the person suffering from mental health problems and the person supporting the person with mental health problems. It’s about responsibility. The person suffering from the mental health problems has a responsibility to get help with their mental health issue. They cannot and should not put all the responsibility for coping with their condition on their partners or other people. That’s the boundary.

The other thing I would do with someone with borderline personality disorder is that I would ensure that their dangerous impulse problems do not affect me. I've had several friends with this problem and you just have to say no to doing certain activities with them. I have come to view dangerous impulse problems as a suicidal. They are trying to kill themselves by accident. Recognize it as such and then take appropriate steps to ensure that you don't get killed in their attempts to kill themselves.

Finally, try to make sure they get the professional help they need and they stick to it.  This is not easy to do and there is only so much you can do. The person with the mental health problems has to take responsibility for managing their condition. You can’t force them to get help. All you can do is encourage them to get help. And if they don’t get that help and eventually succeed in harming themselves, that isn’t your fault. You can’t fix them and you aren’t responsible for fixing them.  All you can do is support them and know, sometimes that isn’t enough.

To help with this – I would also seek out mental health care for myself because supporting someone with a mental illness or mental health issue is mentally distressing and exhausting. A professional will help you learn how to create the boundaries for your specific situation. Which is why the advice is – go to get counseling even if your partner does not.  People’s whose job is to professional help people cope with mental health problems will give you way better advice than I can in a blog post. So if you find yourself in a difficult situation like this – get professional help!