Here is something I started writing about a few months ago. It has been a few months because it’s been difficult.
I want to talk to you about something many parents and caregivers have experienced or may experience. It will sneak up on you. It may significantly impact your life and your ability to provide the best possible care for your child. It’s called Post Traumatic Stress Disorder (PTSD), or other anxiety disorders.
I am not an expert/professional that deals with this problem. All I can do is share with you how PTSD impacted our family, and how we were able to get beyond it.
I first noticed it when our stress was at its highest point, about fourteen years ago. Our daughter was going through huge levels of chemo and wasn’t responding. The stress was huge. I noticed I started to get agitated and couldn’t stand being around people. Small talk was unbearable. I developed a disregard for my own safety. I started isolating myself. I was like a time bomb ready to go off. Does any of this sound familiar?
I have a friend who is an attorney. He told me about his experiences with clients going through with divorces as a result of families falling apart because of dealing with traumatic ordeal involving their sick child.
One of the board members at our foundation lost his older sister to leukemia when he was a child back in the 60’s. He watched how it destroyed his family. His parents sought help, but it didn’t work.
It appears a lot of progress has been made lately in how PTSD affects families impacted by a child's life-threatening medical condition.
The intensity of my anxiety kept increasing so I finally decided to seek help, for the second time, by going to see a counselor. The first time was a failure and I’ll talk about that later.
I went to see a specialist that has dealt with PTSD for decades. When she, Rosalyn, first got started, she treated young nurses struggling with their experiences in Vietnam.
After I described my symptoms to her she said, “You have PTSD real bad and you need drugs.”
The drugs worked; I was on them for a couple years. I had to switch a couple of times until I finally found the one that worked. The counseling worked once I found the right counselor.
Besides the medication and counseling, she also recommended that I spend time outdoors. Back in the 60’s, she said she used to take the nurses out into the nature in the woods for counseling sessions. Nature has this soothing effect that worked profoundly well in coping with PTSD.
She suggested exercise. That really made a difference. She also recommended to “get out of town, change the scenery” if you can. Her recommendation’s worked.
At first, I avoided getting help for two reasons: I thought no one can do anything about it, and secondly, I was ashamed. I thought it was a form of weakness. I didn’t want to share this with anyone. Over a decade ago, I was at a Ronald McDonald House and they had a psychiatrist on site. He kept asking me, over the course of several days, to talk. I was reluctant because I thought the story was too personal. I finally made the decision to do it because I thought maybe he could help. I shared with him our personal story, he listened, bought me a beer, but he offered no advice.
It is my understanding that is their objective is to get you to open up and share your experience and just listen. I needed more than that.
Because of this experience, I felt a mild version of violation and really felt it was a waste of time. Because of this, I felt even more convinced that seeking professional help was a waste of time. I felt this way until I met, Rosalyn, the counselor who helped the Vietnam nurses. I have run into many parents who won’t seek counseling for this reason. We, as caregivers, don’t have time to figure out what will help us. We need answers now because of the intensity of the anxiety is so great. And I do believe there is help if you find the right mental health professional.
If I ever seek help for issues like this again, I will ask the counselor or psychiatrist, “Once you’ve diagnosed my problem, will you provide solutions?”
Rosalyn the counselor who treated the Vietnam nurses was a good one. Immediately, she provided several solutions to help alleviate the problem.
I finally realized that Post Traumatic Stress Disorder was not a sign of weakness, but really a badge of honor. It showed how deeply I loved my daughter.
I have talked to many parents who arrived at that same state of mind, a grim place that is ultimately helpful to no one. We all had to fight our way out of it. It’s not healthy, it’s not productive.
If you feel yourself heading towards that self-destructive, chronically unhappy place, please get help. For your sake and the sake of your loved ones. The loss and devastation that could result from PDTS can be avoided.
Ultimately you have to be in the best possible shape to make some of the most important decisions for your child.
Executive Director
End Kids Cancer