If you’re up to date on the FD NOW blog posts, you’ve had a glimpse at PTSD from an FD patient’s perspective as well as an FD parent’s perspective. There are all sorts of environmental, emotional, and physical triggers that can cause stress and anxiety. I have certainly experienced trauma, triggers, and post-traumatic stress coping mechanisms that developed from my experience of having a sibling with Familial Dysautonomia.
My brother Andrew was in and out of the hospital so many times while I was growing up. Sometimes he was in the hospital for as short as two or three nights, and sometimes months would go by before he came home again. His longest stay was six months long; half a year in the hospital before my family could resume our version of “normal” life.
When Andrew got older, we were able to shift safely to a home-nurse healthcare model to eliminate all the back-and-forth from the hospital. While this helped to keep our family under one roof, it did present a new issue in that my brother and I shared a bedroom wall. Anyone who has experienced an “autonomic crisis” knows that it is an eruptive, chaotic, loud, and, well, traumatic thing to witness. You know the awful sound of someone throwing up? (Think a big gag or retch followed by a few nauseous moans.) Autonomic crisis sounds like that, except for hours on end with little relief. My brother has this machine that we call “The Sucker” that helps to remove the gunk and acid buildup in his mouth from the constant gagging. The Sucker really does suck in more ways than one, considering the fact that it sounds like an actual industrial grade vacuum cleaner suctioning all night on the other side of the wall right next to my bed. With every retch, The Sucker flips on and drones away until the next retching spell. (For more on FD symptoms, see https://fdnow.org/symptoms-of-familial-dysautonomia/)
It feels wrong even to mention my own discomfort with autonomic crises because I know my brother is a thousand times more uncomfortable than I am in these events. The worst part of all is thinking about how horrible he must feel and not being able to do anything about it. It is emotionally painful to be a helpless bystander to his suffering. I wish I could wave a magic wand and make it all go away, or at least tell him when it will be over. But the reality is, when a crisis starts, we have no idea how long it will be until it subsides. Crises have lasted as short as a few hours and as long as a several months. That uncertainty makes it especially tempting to go down what I like to call the “PTSD Rabbit Hole of Doom.” Have plans next week? Cancel them. Holiday coming up? Better let the family know now. Hey, remember that one time Andrew coded in the hospital and almost died? Let’s replay that one over and over in case you forgot. The Stupid, Not-helpful, No-good PTSD Rabbit Hole of Doom.
Now, as a young adult, the trigger that comes up most regularly in my daily life is this anxiety around planning and scheduling. There is not only uncertainty about when a crisis will subside once it starts; most of the time we don’t even know when it will happen in the first place and why. It’s like a surprise, and not the good kind. Growing up in the middle of the chaos of chronic illness made me hyper-aware of the fact that important plans can fly out the window without a moment’s notice. For example, I remember the night before my own bat mitzvah, I was thinking about plan B if my brother woke up sick and one of my parents needed to stay behind with him. I remember, too, the morning we were supposed to leave for his Make-A-Wish trip to Disney World; we packed up the car for the hospital instead. These scenarios have played out so many times…birthday parties, holiday gatherings, quick trips, or longer vacations (if we dared to plan one at all). Expecting the unexpected is about all the planning that seems possible sometimes.
This uncertainty makes it difficult to do the things that most families do without hesitation. Over the last few years, Andrew has been much more stable and we have dabbled in planning things together as a family again. However, when our plans start to move from hypothetical to realistic, I still find it difficult to quell the rush of panic. I feel myself freeze as I look at the calendar, because if we pick a date then it becomes real; and if it becomes real, it is a ready target for FD sabotage. Even though Andrew’s health is the best it’s ever been, when I start to feel the weight of all the plans that went awry in the past I just shut down and need help to refocus.
I have noticed this “shut down” FD sibling coping mechanism in other areas of my life, too. Sometimes I don’t always know what’s going to trigger me to disengage. It could be as simple as seeing my mom cry at a TV show, or sitting in the waiting room at the doctor’s office, or even trying to speak up during a work meeting. I have these flashbacks that cross my mind and signal my body to flee or disassociate. Even though I logically understand that I am not in any sort of imminent danger or distress, it is amazing what the body and mind remembers even when there is not always a black-and-white explanation.
For many years, my family has been working with a psychologist who specializes in helping patients with chronic illnesses and their families. Setting aside time to discuss and process my experiences with an unbiased professional has greatly helped me to better understand myself on a deeper level and to work with the havoc FD has caused our family. By prioritizing my mental health and staying open to guidance and insight, I have been able to identify various PTSD triggers, notice my reactions/behaviors associated with them, and learn how to better communicate about my thoughts and feelings with others. I would encourage anyone that has had a similar experience to seek professional help. There is no shame in acknowledging your hardships or saying out loud “this is not easy.” Seeking help and support does not make you any less of a fighter. In fact, it will make you stronger, and healthier, and better equipped to keep going.
Emily Slaw, M.A.
Sibling to brother with Familial Dysautonomia