‘You’d never know’: The secret life of mothering children with mental illness

If you saw my children, you would never know. You would never have a clue how much we have suffered. You would never believe that, not long ago, the smiling, happy, social, outgoing, straight “A” student (whose Facebook photos get hundreds of likes and comments about how beautiful she is) was suicidal. Or that she comes home from school and has anxiety attacks that leave her hyperventilating for hours when she is supposed to be studying for an exam.

According to the NIH (National Institute of Mental Health), just over 20 percent (or 1 in 5) children, either currently or at some point during their life have had a seriously debilitating mental disorder. So if you know more than five kids, statistically you know someone (and numbers are virtually the same between sexes). So if you think you don’t, think again: With many children, you may not be able to tell.

There is a misconception that children who suffer from mental illness are “off.” That they don’t act stable. That they aren’t normal. But they do act stable, they do act normal. Until they don’t. And then they do again.

All too often, people believe that mental illness is something you can snap out of. Or that it is situational, dependent on a particular set of life conditions or circumstances. I cringe every time I hear someone say, “Look at her life! She has nothing to be depressed about…” or when a person says that someone–who suffers from an anxiety disorder–is making a big deal out of nothing. And no, laughing, relaxing and eating will not make this anxiety or depression go away: It is a mental disorder.

We would never look at a child in a wheelchair and comment that we don’t get why it is so hard to just stand up and walk. We understand that this is out of his control. We know that he didn’t choose to be stuck in a wheelchair. So too with mental illness. No one chooses to suffer from depression, an anxiety disorder or an eating disorder. And because it is often invisible in a way that a wheelchair is not, mental illness is more complicated.

“What’s Wrong?”

As parents, when something is wrong we want explanations and then solutions. Mental health simply doesn’t work like that. As much as the experts understand, there is so much more than they don’t understand. And it is terrifying.

When my daughter broke her wrist we brought her to the emergency room. They took an x-ray and then carefully examined it and could pinpoint the fracture. Then, based on where it was, they determined the type of cast she would need. They then administered the cast and after the time period that she needed to wear it, it was removed and followed with physical therapy to strengthen the wrist again. Then a follow up x-ray showed that the fracture had healed and all was well again.

But if you come into the emergency room with your daughter who just tried to kill herself, who is hearing voices, who is terrified.… you are given a long list of questions. Each of these questions is to be answered with one the following: “All of the time,” “Most of the time,” “Some of the time,” “None of the time.” You rate how you are feeling on a 1-10 scale. And based on these very amorphous questions (which seem virtually impossible to answer), and some follow-up discussion, a determination is made regarding diagnosis, and what medication they should be taking. The scariest thing for me as a parent was to receive a diagnosis and then know that there was really nothing they could do that would necessarily make it better. Because, unlike strep throat (where we know antibiotics will work), we have very little understanding of how medications for mental illness will react with a growing and developing brain.

And if you read the warnings, get ready. They will tell you that a possible side effect of the very medication given to your child to help deal with suicidal ideation is suicidal ideation. Can you imagine what that is like to give your child a medication knowing that if he or she suffers from the side effect, the medication itself may drive your child to try to take his life??? A potential suicide could result from medication you allowed your child to take? Yeah, no pressure there.

It Can Happen to Anyone

When my children were diagnosed, my first thought was that I must have done something terribly wrong. I wondered what I could have done differently to have prevented it. While intellectually I knew that this was beyond my control, it is still hard to absolve yourself when your children are involved. All the more so when the issue is depression or suicidal ideation. There is nothing worse than knowing your child is so miserable that he would rather die than be alive. And so easy to interpret that as he would rather die that be with you. Around you. In your home. With you as his mother…

Before I had kids I was naïve enough to believe that if you were a good parent your child wouldn’t suffer. But what I have learned is that no one is immune; mental illness attacks indiscriminately. Here’s a fun fact: mental illness is often genetic so you may not only be part of a genetic history that impacts that one child’s mental health, but you may even have more than one child who will suffer from the illness. But…we do not cause mental illness because we weren’t good moms or because we yelled too much. Parenting a child with mental illness is hard enough. Beating ourselves up in the process is simply not helpful and not appropriate. Our children need us to be there for them, not feeling sorry for ourselves.

I have come to understand that being a good parent doesn’t mean your child won’t suffer. Being a good parent means that if your child is suffering, you will address it. You will be there for your child. You will get that child the intervention and help he needs – even if it costs you an arm and a leg, which it very well might.

Isolation

When you receive the devastating news that your child is suffering from a mental illness, it is hard to know who you can turn to:

• There are, simply, very few people you will be able to talk to about it. Not many can understand or relate. They may mean well and sympathize, but they just don’t have a clue what you are really going through.
• It is also easy for others (who may not have experience with mentally ill children) to think that the child’s behaviors are the result of the parenting style. The only thing worse than not having any feedback is having inappropriate, hurtful, condescending and blaming feedback. Telling me my child should just “snap out of it” or be forced to do something because “he will have to deal with the real world one day” is not helpful and dismisses what is a serious illness.
• Even when the parent wants to speak about it and seeks out support, there is a responsibility to protect the privacy of both the child with the mental illness and siblings (thus the reason this piece is anonymous).

For me this has been a real balancing act. I want to help break the stigma of mental illness and speak openly about my experiences, but my children’s illness is not mine to share. And they most certainly are not ready to share it themselves.

One of my most excruciating moments was when my child was hospitalized for suicidal ideation and no one knew. I couldn’t talk about it. There was no Facebook post I could send out to let the world know how I was struggling. When my child had a surgery unrelated to mental illness, in a heartbeat I was inundated with get-well wishes, offers of meals, babysitting, support. But when my child was taken away and put in a room where I was not allowed except for one hour a day, I was all alone. My husband was with our other children. It was just me alone.

And the days that followed? Rather than sharing and receiving support from those around me, which I desperately needed, I spent my time creating the story I would tell the school, my work, her friends, and other people who would wonder where she was. The truth was simply not an option.

Trying To Get Help

If you are lucky, you live in a state where you child is eligible for subsidized or free health care (Medicaid) based on a diagnosis of mental illness. If you are eligible, you are limited to the doctors and professionals that this insurance covers. Read: very few options. Most of them not great. And if you’re unlucky? You are on your own.

You want “great” care options? You want top-level help for your child who is literally in a life-and-death situation? Well, hope you have about $400 for the first appointment. And after that, you understand that the psychiatrist or the psychologist may want to meet with you and your child weekly. Yes, weekly. You can’t afford that? Well then, hope your child agrees to not kill himself while you wait and see if you can save the money or while you wait for an appointment with someone you can afford. How long is the wait? Oh, it could take up to six months for certain appointments.

The system is broken. Our children get their flu shots for free. They get their vaccinations. They have yearly well visits. If their physical health is at risk it will be addressed and hopefully covered. But their mental health? Nothing. Certainly nothing preventative and even after the fact, the options are fairly limited: if things are really bad you can hospitalize that child (because putting your baby in a mental institution where you are legally not allowed to be with her is a great option).

So if you know someone whose child is suffering from a mental health issue, chances are in addition to the emotional turmoil the parents are going through, they may very well be suffering financially as well.

What You Can Do

If someone shares with you that her child is suffering, here are things that wil help. I know they will help, because I needed these things and still do.

• Be supportive, ask what you can do to help. If the diagnosis is new and raw, she may not know. She may be too overwhelmed to know what she needs.
• Take the time to learn about her child’s diagnosis so that you are aware of what they will be dealing with. There is so much misinformation and misunderstanding about mental health. The best way to affect change is through education.
• Get recommendations and suggestions from others about mental health support groups that exist to support families dealing with these kinds of situations. It will be much easier for you to post and ask on behalf of an anonymous friend than it would be for her (or you) to self-identify as someone needing that help.
• Help your friend navigate the medical psychiatric system, which can be quite difficult and tricky. Having an advocate who is not emotionally involved can be a tremendous help, especially since you may hear time and again that the insurance isn’t accepted. So if your friend is open to it, offer to look up therapists, psychologists and pediatric psychiatrists and put together that list for her so that she need not spend the time doing all the research herself. Call the offices and find out what insurance will be accepted, what the wait time is for an appointment and what the process is for setting up an appointment.
• Help your friend with the other children. When one child suffers from a mental illness, all the other children in the family suffer as well. It is hard for them to understand what is happening and why their parents may be preoccupied, distracted or mainly focused on one child. If you know a family in this situation, offer to take all the kids out to a movie for the night. Or if the child will be away at an appointment or during a hospital stay, do something special with the other children. Maybe get them a small gift; something to show that others are thinking of them.
• Remember that your friend is in great need of a break as well. Take her out to coffee, encourage her to go with you to the gym, treat her to a manicure. She needs to be pampered as well to have the strength to deal with what she is facing. Another great gift is to stay home with her kids so that she and her spouse or partner can get out for the night. They will most definitely need some time alone together.
• Finally, don’t wait for her to reach out to you. She may be too exhausted to call and check in. Or too overwhelmed to ask for support. Trust me, she needs it. Check in with her. Send her an email in the middle of the day to let her know you are thinking of her and you care. While she may not be in a position to be a good or present friend to you as she faces this challenge, she will most definitely need you as a good friend for her.

And on her behalf, let me thank you for her. She may not be able to thank you herself…yet. But she is so grateful to you and you are helping her more than you will ever know. So thank you!

“Yiscah” (a pseudonym) is a mother of many who is learning, growing, struggling and loving raising her children, some of whom suffer from, and all of whom are impacted because of, mental health issues. She is a professional writer, educator and inspirational speaker. 

Since this was published on Friday, March 4, one of our readers translated it into Spanish as a reference for Spanish-speaking readers. Here’s the translated version. For more information about mental illness, visit the National Alliance on Mental Illness at NAMI.org.