Our trips to the hospital emergency room began when our daughter was experiencing severe stomach pain and vomiting, at age 12. It took more than a year for her doctors to eliminate the usual suspects. She had not eaten bad food. There were no signs of infection. No parasites. And she was not in it for the “attention”.

“I still tear up when I think about that first year of her illness. Seeing her is such pain and not knowing what more I could do to help was almost unbearable.”

I started to feel like a frequent flyer at our family doctor’s office and the children’s hospital. We knew the routine. We had the health history down and could ably describe the timing and symptoms of the attacks. There were many, many sick days when we didn’t bother to go to the doctor because we weren’t getting anywhere.

Finally, one evening at the hospital, our daughter was so ill and so dehydrated that the nurse could not find a vein to do bloodwork or replenish her fluids. Not in an arm, not in a leg, nowhere. For once, it felt like someone was as concerned as I was. I remember that she asked us a whole lot of questions. That was the night we saw the doctor a second time. He asked us if anyone had done any screening for mental health causes. They had not. So, he made arrangements for a member of the mental health team to come by and see our daughter. By the time we left the hospital that evening, we had something new to explore. It could be anxiety.

Eureka?

In the second year of her illness, our daughter saw a social worker but resisted the notion that cognitive behavioural therapy could help. She had a lot of trouble identifying anything in her life as the cause of her anxiety and found it incredibly frustrating to go over her thoughts, feelings and behaviours with a fine tooth comb. Her health did not improve in any significant way.

Next, she was referred to a psychologist. Once there, our daughter went through a long differential diagnosis process. Based on the results that they presented to her, she accepted that she was experiencing both generalized anxiety and clinical depression.

I spoke to people in my family. I made it my job to keep all lines of communication open. I attended her medical appointments so that I could share my “observations” and ask for “homework” that we could do together. Without prying, I wanted to understand what was being discussed, how I could help, and what I could do to mobilize the family. I wanted to create a safe and healing environment.

With time, we realized that she often had a good day at school after being home for the weekend. This made the idea of a stress response (anxiety) much more real to our daughter and she leaned a little harder into her therapy. The psychologist encouraged our daughter to try attending school in more predictable and manageable time blocks. It worked well at reducing the number of her panic attacks.

By the age of 15, her anxiety seemed well controlled but then the panic attacks returned with a vengeance. Once again, she requested accommodations at school and finished her year by limiting her “on time” at school.

Continuing in talk therapy, her anxiety improved with remarkably fewer panic attacks. But her depression got noticeably worse. Then, she started “picking” and having “suicidal thoughts”.  I knew that more had to be done!

With physician oversight, she tried multiple medications, at multiple doses, as well as add-on short-acting medicines. There was no silver bullet. But she has come to understand her depression just as well as she understands her anxiety, and has stopped picking most of the time.

There is hope.

Much to her credit, she graduated high school with honours and decided to continue on to university.  She stayed in residence for her first year, had just one panic attack, and there was no picking. Understanding her history, I know this sounds great but you really wouldn’t want to be her.

Depression is her constant companion. She worries a lot and can’t seem to get comfortable with anything unseen or unknown. She doesn’t leave the house of her own volition. If she does agree to go somewhere, she rarely wants to get out of the car.

Travelling with her is a hardship. She gets hyper sensitive and wants to control the situation. ‘Stay right beside me.’ ‘Stay close, but not too close!’ No one is to hear us talking, and no laughing! ‘Don’t touch the merchandise unless you’re going to buy it.’ ‘Don’t talk to anyone unless they talk to you first.’ There are so many rules that I honestly can’t remember them all.

Sometimes I need time away from our daughter so that I can lift myself back up. I am grateful that I have learned to pass tasks off to my husband when I need a break. I have also made it okay for our son to express his complicated feelings toward his sister. We can talk about what it is like to have mental illness in our family.

On any given day, you will find us making compensations for her illness, cajoling her into an activity, challenging her beliefs, or finding whatever comfort we can in understanding that it is her illness that is driving most of her destructive thoughts and behaviour.

Never give up!

So, it’s been eight years. On a good day, she is a highly-functioning independent adult with places to go and people to see. But most days, depression clouds her thoughts and sucks the enjoyment out of her life. Her anxiety is active, too. It’s not much of a problem at home but it’s ready to awaken like a lion as soon as she steps out into the community. She tells me, at every opportunity, that nothing can help her get better. It feels like she has settled for the status quo.

Compared to our daughter, I must have been born sunny-side-up. So far, I have had enough hope to carry the both of us. I will never give up the search for that one book or therapist, that one medicine, or that alternative therapy that can bring her relief. That’s my job as her primary family caregiver.