The truth about journeying with illness that isn’t physical

Monday was international mental health awareness day and as this is something that has become part of my family's life over the last few years, I have been pondering how to write about it. I'm hesitant, but last week I was encouraged by two separate people within an hour of one another, that telling our stories is valuable and important, something I know, but need reminding of occasionally. And another person on the same day asked about my writing. All of this was a reminder that God has given me a gift for writing, so I should use it, even when it is a little bit scary. For though I’ve talked to various people about portions of the journey that our family have been on with mental illness, writing it in a public forum is a different level. I’m scared to hit publish on this post!

Until mental illness became part of my own family's story, I knew little about it. Though possibly I knew more than some as my university degree touched on it. But I consciously tried to stay as far away from having to interact with this topic and this “scene” as I could, until it appeared under my own roof and I couldn't run any more. I’m writing for those of you who have no experience of living with someone with a mental illness, that you might know some of the struggles we have. But I also write for the other parents out there who are quietly, perhaps silently, struggling.

I recently got quite upset when someone wrote on their social media page that they'd never heard a negative comment about their child. It's difficult to imagine a life like that. I'd like to be someone who hasn't had to talk to teachers about their child's behaviour (behaviour that stemmed from a neurodevelopmental disorder and mental illness). I'd like to be someone who hasn't had to take their child to a psychologist for an assessment and had a diagnosis (or several) presented to them. I'd like to be someone who hasn't had to research psychiatric drugs and sit in a psychiatrist's office.

I'm scarred because I've heard mothers of classmates of my son say things that show they don't understand their kids are barely aware that my son is in their class, let alone that he’s struggling. And I’m wounded because another mother told me she'd hate to have a child with a disability. So

This little plant is thriving in a hard place. That's what I want to see me and my family doing too. 

I hesitate to share about our experience because I know there are people out there who simply aren't interested in understanding.

But what I was most sad about when I started this blog post the other day is that someone may think that they have never heard a negative thing about their child because they are great parents and have, in their own power and strength, raised amazing children.

I know that I haven't been a perfect parent and that my kids have not had a perfect childhood, but I can't allow myself to be ashamed that they've struggled. That we've struggled as a family. A lot of what's happened isn't my fault, and nor is it the fault of my children.

I wish I didn't have the knowledge that suicidal thoughts are part of one of my son's experience. I wish that another of my sons hadn't had someone close to him take her life.

I wish that our dinner times had been ones of great conversation and connection over the years. We’ve often struggled, and it’s not because we don’t value that time. We’ve tried, really hard, every day, but dinners are still often a struggle. Polite conversation is not something everyone does well, or happily. I wish I could say I hadn’t felt judged because of my kids’ social skills.

Mental illness in a teenager is difficult because it is very often not easy to diagnose. It masquerades as a lack of motivation, as belligerence, as disobedience, as stubbornness, or a lack of confidence, and many other ways that look like behavioural issues, not illness.

For example: Is not sitting with anyone at lunchtime at school worthy of concern? Are they shy and prefer their own company, or do they lack the same interests or social skills as other children, are they the victim of bullying, or are they socially anxious, or do the sounds that other people make when they eat bother them? As they get older: not being able to get assignments in on time: is that just poor organisation, or is it because they have trouble concentrating, or are they depressed and struggling with motivation? Or is the effort just to get out of the house and interact with others through the day draining them of all the energy they have and there’s none left for doing difficult assignments?

I wish I was someone who could talk freely with my son about future plans. Plans for college or work; about the big, hairy audacious goals that some young people have. For several years we’ve struggled to talk to him about the next week. Anxiety takes a toll and makes planning for the next day hard, let alone planning for the start of life after high school.

As a parent of someone with mental illness, I've had to be hypervigilant at times (and I know that is the case for some parents of kids with other disorders also, like epilepsy and some kids on the Autistic Spectrum). Hypervigilance is exhausting. It's a hidden hurdle a parent must overcome to participate in daily life outside the home. If you have to be hypervigilant, it's important to take care of yourself and please don't feel you have to make excuses.

Mental illness in your house means you become a buffer between your child and the rest of the world. An advocate too, if you choose to be. I've had to spend a lot of time explaining our son and our family to others. Explaining why my son isn't getting out of bed at an "appropriate" time, explaining why he's wearing headphones, or why he's hitting his head. I've had to explain why he's not participating in polite dinner conversation or why he won't share a bedroom with his brother when we're traveling.

We've had to adjust our family's life and our parenting in so many big and small ways, it is hard to even remember them all now because many have become instinctual. It's only when other people see us behaving in a way they don't think is normal that we remember (and may have to explain).

Grief is part of all this and I guess that is part of why I feel this so deeply when people "boast" about their brilliant kids. I grieve that my family has suffered in this way. I am sad that what seems easy to some, is a battle for us. On a bad day it's tough to keep looking upwards, to trust that our God loves us and our kids as much as he says he does. To know that he goes before us, and that our situation is known to him.