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Family Dynamics
For Siblings of the Medically Complex and Disabled
Sibling "survivors" have a special set of emotional needs.
Posted May 8, 2023 Reviewed by Hara Estroff Marano
Recently, I had a chance to conduct an email interview with Johanna Dobrich, LCSW, author of Working With Sibling Survivors In Psychoanalysis, a rich clinical and theoretical book discussing her work with people who have disabled siblings. We hope this will be useful to readers.
What does it mean to be a "sibling survivor"?
Recent trends in trauma research and clinical knowledge emphasize the role of ACEs (adverse childhood experiences) on human development over the lifespan. Ongoing medical trauma is typically not included in the obvious list of environmental conditions that create and contribute to an experience of having survived something, particularly from the vantage point of children who witness it.
Survivor siblings refer to the experience of those siblings who grow up alongside the presence of a sibling with a chronic, life-limiting, severe disability, often accompanied by medical complications. The survivor siblings are rarely the protagonist in anyone’s understanding or mind, and yet what they witness and encounter while growing up alters the course of their intrapsychic and interpersonal development.
What are the most common growth opportunities for sibling survivors in therapy and in life?
Survivor siblings benefit enormously from relationships in which they can experience the loss and pain of being different from their disabled siblings, as well as the gifts that relating across difference early on and throughout life brings forth. Relationships that can hold complexity without polarizing or collapsing into only noticing what’s good or difficult about these early life experiences next to medical complexity and difference are essential to growth. Therapy that engages space for survivor sibs to encounter the full range of emotions that growing up in proximity to illness, death, instability, and difference provoke can be hugely growth-enhancing.
These kinds of relationships offer an opportunity for survivor sibs to let others care for them; rather than reflexively taking care of others. Learning to accept and receive being cared for can be very growth enhancing. Being taught to listen within, rather than compulsively giving out, is a needed and necessary step of emotional growth that often gets missed developmentally.
What tips/advice do you have for parents with affected and unaffected children?
The presence of medical complexity and disability affects everyone in the household. The impact is not limited to the disabled or the caregivers alone. Affected parents need to know that even their neurotypically presenting kids are deeply aware of and impacted by what they witness happening with their disabled sibling/s and how you as the parents navigate this experience. Survivor sibs take their cues from the caregivers about what emotions are appropriate/permissible to show and which are not; so even though you as a parent may be in a crisis mode, being mindful that how you are creates the emotional environment in which this experience is happening for the children is very important to remember. Check in on the survivor sibs, give them permission explicitly to voice and share what’s coming up for them in relation to home life and fear without judgment and anxiety whenever possible. Witness their experience of witnessing. This is a hugely protective force that can be offered to survivor siblings by caregivers. In psychology we call this attunement.
For those parents with unaffected children—as part of the community, you too have a role to play, in making space for the experiences of the survivor sibs who may be inordinately stressed-out youngsters. Invite them to dinner and to leisure activities with your family that their own families may not be able to offer them due to circumstances. Bring some levity into their overly burdened early emotional lives, a taste of carefree-ness that they may never see when at home whenever possible; it will not be forgotten!
What tips/advice do you offer to adult sibling survivors?
It can be tempting to minimize and avoid the impact of growing up alongside chronic life-limiting and life-threatening conditions and/or accompanying disability when it did not happen directly to you. But the experience of witnessing someone you love and those who love them suffer and struggle, as well the surrounding societies in ability to be responsive to that struggle, is a legitimate cause of much mental anguish, pain, guilt, and confusion. These feelings are not discriminatory to have.
You can love and advocate for the dignity of all lives, and still be impacted by the challenges of navigating across difference within families and society, particularly as a young developing child oneself. Find community who can hold the complexity of your experience as you get to know and better account for this kind of survivorship. Go to therapy with a developmental-trauma–informed therapist to examine the impact of your own survivorship on your sense of self, your relationships ,and your world view. Pay loving attention to how this legacy of survivorship lives within you, to make yourself and the world around you, a better, kinder place to be.
Johanna Dobrich, LCSW, is a psychotherapist/psychoanalyst specializing in the treatment of dissociative disorders in New York City. She is a recipient of the 2023 Sandor Ferenczi Award from the International Association for the Study of Trauma and Dissociation (ISSTD) for her book Working with Survivor Siblings in Psychoanalysis. She writes about complicated grief, loss, and treating trauma from a contemporary psychoanalytic frame.
