As a child I often felt misunderstood and lived in constant terror. At night I was terrorized in my sleep by a skeleton man covered in blood. Night after he would pursue me through my house after he hurt each person in my family in front of me. I would wake up fitful, and in a pool of sweat. During the day I would be afraid for the lives of my loved ones and for the life of myself. I would check the locks on the doors and windows compulsively, terrified of burglars. I would have a breakdown at the sight of a bug in my room and have to sleep on the couch with all the lights on. I would tantrum at the slightest inconvenience. I was diagnosed with depression and severe anxiety by age 13. None of the medications I was given by doctors worked. Therapy made me angry. Relationships with people around me deteriorated. It felt hopeless. I felt so alone growing up. I would find out later that I had a heritable condition known as Fear of Harm.
When I was 20, I gave birth to a beautiful baby boy. It was the first time in my life I felt truly connected and important to someone. I knew this little boy would need me, and I knew I needed him too. I was still struggling with mood swings, but the night terrors had become infrequent many years previous. I still had many fears, but they had changed in nature as well. What if my baby stopped breathing? What if he got hurt on the playground? What if I fed him something he was allergic to? These thoughts plagued me on a 24 hour loop. I never thought that these fears could be a symptom of an illness that could be passed down to my child. In the end, that’s exactly what happened.
It was very early on in my son’s life that I knew something was actually wrong. Those first months are still a blur, because my child seemed to only stop crying when he was in my arms. I tried so many ways to soothe him, but nothing seemed to work. By age 3, my sweet little guy was having tantrums that went on and on for hours. He’d stay up all night, screaming and yelling if I left the room. Sleep only happened if I sat next to him while he was trying to fall asleep. He was always warm too. His sweet little toddler cheeks would turn red and his hair would be damp. When he started to climb out of his crib, he would wake me up at 2 am and get into bed with me. We started co-sleeping on the sectional couch with his head touching my head as it was the only way he could sleep until age 7.
By the third week of kindergarten his teacher asked for a meeting. She was very concerned that my guy couldn’t stay in his seat, couldn’t pay attention, and was very disruptive in class. One day he came home and told me he believed his schoolmate wanted to kill him. We went to a pediatric neurologist who very quickly diagnosed him with ADHD and ODD. This is a common misdiagnosis in children with FOH. We tried stimulants, but they made his tantrums worse in nature. He couldn’t be separated from me for any length of time without having a meltdown. Those years were so hard, because I knew something was off and I felt we didn’t have the correct answers yet.
When he was aged 10, I came across information on Fear of Harm. The symptoms matched so well and ticked every box! No other diagnosis had covered every symptom my child had displayed. It had never even occurred to me that his tendency to run out into 30 degree weather without a coat was related to his night terrors. I cried that night because I felt I had finally found a name for what was happening. I had him screened and properly diagnosed, and the correct medication was started to address his illness. He started to show improvement immediately, but I still felt very alone.
If you’ve ever had a loved one diagnosed with chronic illness, you know how lonely it can feel to be a caregiver. When the illness is invisible, it’s even more of a challenge. I started to isolate myself as I felt the judgments of friends, family, and even strangers were so hard to handle. Not dealing with people at all became preferable.
That’s when I was directed to CMHRC’s support groups. I met other parents and caregivers who knew what we were going through. I learned so much and was guided through the beginning stages of wellness with empathy, and finally found a community that understood. We used the school support service and had CMHRC staff advocating for us in IEP meetings and with school administrators. I have shared my high and low moments with the people I’ve met through CMHRC, and have felt supported. I’ve learned about products that helped manage the disorder and about things that maybe weren’t as helpful. The support and empathy our family has received from CMHRC has been invaluable to us as we make our way on this path. There is hope now, when previously there wasn’t much. It’s a priceless resource that I’m so glad exists for my child. I wish it had been around when I was growing up.