Grief Versus Trauma: Appropriate Therapies and Coping Mechanisms for Medical Parents

Today’s post focuses on the differences between grief and trauma and is based on the work of social worker and EMDR therapist, Meghann Crane-Russ. I met Meghann at a retreat I attended through the non-profit, We Are Brave Together, that focused on improving nervous system response to chronic stress. Meghann’s advice on coping skills and therapies was particularly pertinent for the medical mothers at the retreat because she sees so many parents in similar situations in her clinical practice.

Like so many other medical parents, for years I was confused by my own root problems and therapeutic needs. Before the retreat it never occurred to me that I might be treating my mental health issues with the wrong kind of intervention. To me, the difficulties of medical parenting simply coalesced into an amorphous ball of stress to be counteracted with things like breathwork and “therapy.” I’m sharing Meghann’s wisdom today in order to clarify some things about grief and trauma I wish I had known earlier.

Let’s start with trauma, which Meghann defines as “the overwhelming psychological and physiological impact of an experience that exceeds a person’s ability to cope, process, or integrate what happened.” She explains how it “disrupts a sense of safety, connection, and control, leaving the nervous system stuck in patterns of fear, hypervigilance, or shutdown.” When it comes to medical parenting, rather than centering on a single traumatic event—such as an assault—trauma often comes in the form of episodes, or patterns of experiences that happen over time. For most of us, those patterns arise due to medical trauma.

Medical trauma occurs during hospital visits, medical appointments, procedures, or surgeries. These experiences can involve watching our children suffer or even feeling complicit when we have to do things like restrain them. Triggers can vary but often include things like the smell of antiseptic, the sight of a hospital corridor, or the sound of our child screaming. Medical trauma can be particularly disturbing because it happens in settings that are supposed to be safe with people who are supposed to be helpful, caring authority figures. And, as Meghann points out, medical trauma is the only type of trauma that involves non-optional repeated re-exposure. Because the traumatic events occurred in our local hospital, doctor’s office, or even in our own homes, neither we nor our child can escape revisiting the scenes of the trauma over and over again.

Like many of you, I have had my own struggles with medical trauma because of my daughter, JJ. One particularly difficult traumatic episode occurred when she was four and, because of a reduced swallow function, suddenly stopped eating or drinking. After being turned away by our local hospital, my husband and I rushed her limp, listless body to an emergency room four hours away. After much begging, a feeding tube was finally inserted into her stomach shortly before she succombed to her period of prolonged dehydration. Unfortunately, this is only one instance of trauma in JJ’s medical journey. My list also includes things like witnessing her grand mal seizures and restraining her during dozens of self-injurious meltdowns.

When it comes to treating trauma, Meghann emphasizes the fact that we need to look specifically for trauma-focused treatments that help the nervous system process past experiences. Eye Movement Desensitization and Reprocessing Therapy (EMDR) and Trauma-Focused Cognitive Behavioral Therapy (TF-CBT) can be particularly helpful. Both therapies center on the reduction of physiological reactivity, intrusive memories, avoidance, and fear responses. (It is important to note that they do NOT simply rely on talking through our experiences). I have written extensively about my positive experiences with EMDR in a previous post and would highly recommend it to any parents struggling with medical trauma.

Grief, on the other hand, is often less abrupt and can occur on a long and nuanced continuum. It does not involve sudden, threatening feelings that immediately light up the nervous system, but rather waves of mourning that ebb and flow over time. But it might be comforting to learn that grief can also coexist with more positive emotions and experiences—especially later in our child’s disease journey—such as love, gratitude, and a strong sense of purpose.

Meghann highlights two types of grief that are particularly prevalent in the medical parenting world: adjustment to illness and anticipatory grief. Adjustment to illness is the “ongoing process of adapting to uncertainty, caregiving demands, and repeated changes in a child’s health needs.” When our family first received JJ’s diagnosis of Rett Syndrome, for example, I had a long list of losses, such as my career, the milestones she would never reach, and the freedoms we would never enjoy as a family. As we adjust to our child’s diagnosis, we have to grieve these unexpected losses while simultaneously learning how to become advocates, therapists, nurses, and medical coordinators.

Parents like me also experience anticipatory grief, or the sense of distress or sadness that occurs before a loss or death. Because JJ’s disease becomes progressively crueler over time, I sometimes grieve her losses in advance. As she approaches adolescence—a particularly precarious time for people with Rett—I can’t help but think about the possibility that her mobility could worsen, her muscles could tighten, her spine could curve, and her seizures could intensify. On my dark days I also ruminate about the worst-case scenario. Because while early death is certainly not a foregone conclusion with Rett Syndrome, it is a specter that hovers over every parent, causing us great fear and unease.

When it comes to adjustment to illness and anticipatory grief, Meghann recommends things like grief-focused talk therapy, peer support, parent support groups, and advocacy or systems navigation work. When it comes to my own grief, I have found all of these things to be helpful. I have a talk therapist who is a special needs mother herself, and I have found great comfort in our sessions over the years. I have also experienced the profound positive effects of parent support groups and friendships with other medical parents. Talking with others also struggling with grief normalizes it and frames it as a common human experience.

Because grief can stem from unpredictable sources, it’s important to have your own coping mechanisms at the ready. You never know when that milestone, school or family event, or throwaway remark will stir up an unexpected wave of sadness. It is important not to ignore these feelings and instead validate them and allow ourselves to feel them deeply. (At the right time and in the right place, of course). Otherwise, we risk the sadness resurfacing in powerful and harmful ways down the line.

It is also important to turn these feelings into something, if not positive, then at least empowering. If we make meaning and derive a sense of purpose from our lives as caregivers, it can be a boon to our mental health. We can counteract our feelings of helplessness and sadness by doing things like advocating for our children’s needs, helping other families, or raising funds for a cure. We can also take control of our own narrative by crafting something out of our pain. When we make a piece of art, create a podcast or video, or write a story or poem, we are taking back agency, creating connections with others, and making sense out of a senseless situation.

Obviously, my chosen form of meaning making comes in the form of writing. However, I’d like to offer a word of advice for anyone interested in this particular coping skill. Many people simply lump all types of writing together, but I believe there is a big difference between journaling and more structured, polished writing. I personally find journaling frustrating because it simply involves spewing feelings onto the page. Rather than making meaning, I find myself retriggered and at the mercy of my emotions and past experiences. It is only when I craft a story out of these experiences that I take back control and my grief ebbs away.

When it comes to medical parenting, both trauma and grief play a big role in our lives. Without the proper therapy and/or coping skills, they will not only continue to reappear, but also to dominate our thoughts, actions, and feelings. So please, do whatever you can to process them and find access to the correct form of therapy. Grief and trauma might not be things we will ever escape, but they do not have to control us. In fact, they can even have unexpected benefits. When we put in the work to understand them, we often become more purposeful and empathetic caregivers to our children. And, perhaps most importantly, we emerge as stronger, better versions of ourselves.