ALS Sibling Experience, a profoundly life-altering phase, is a reality many siblings and familIes unfortunately face worldwide. But in this journey of shifting emotions, medical challenges, and adjustment to a new norm, various remarkable yet hidden aspects surface. In the core of family grief lurks an unexpected strength, a force which helps sustain the family unit during such challenging times. Unveiling this hidden strength has the potential to shed light on current understanding of family grief and overall family coping mechanisms.
Our perspective on what the ALS sibling experience could offer collectively to a family, particularly in times of grief, unearths vital insights about resilience, kinship, and the significance of shared experience in dealing with a chronic illness like ALS.
Hierarchies of Strength: The Interplay of Roles in Family Grief
An ALS diagnosis brings sorrow, apprehension, confusion but also unexpected strength to the forefront. A keen observation reveals that the siblings of an ALS patient inherently start demonstrating resilience and wisdom, often beyond their years. An array of responsibilities are often laid upon them, directly and indirectly (1).
Children, who are siblings of an ALS patient, end up taking an instrumental role in the family unit. The necessity to interact with doctors, nurses, social workers and other medical professionals makes them proficient far early and expands their understanding of life and death (2).
This maturity, knowledge and resilience, despite the enveloping sadness, forms the ground of the untapped strength that each family bears. Thus, the ALS sibling experience becomes an inherent part of the family strength as everyone rallies around to face the challenges together.
Facilitating Resources and Support
ALS families have an underscored need for support and resources. This can range from financial to psychological support, easing the many burdens carried by these families. An example is the ALS Association, which not only funds global research efforts, but also aims to empower people affected by ALS and their families through helping navigate the myriad challenges of living with the disorder (3).
Living with Grief: The Strength in Acceptance
While it’s entirely normal to struggle with acceptance when a sibling has ALS, the acceptance phase forms a pivotal part of the overall grieving process. In acceptance, siblings find strength to confront the new reality.
While the process of grief only serves to underscore the profound loss, acceptance makes room for adaptation to the new circumstances. It allows siblings and the family to acknowledge the grief, allowing for an open expression of feelings, thoughts, and fears.
Power of Togetherness
Despite the challenging circumstances, the ALS sibling experience can also be instrumental in strengthening family bonds. The shared experience and collective struggle bring siblings and parents closer together.
Strong family ties foster a sense of belonging, which has been shown to induce psychological wellness, decrease stress and cultivate resilience (4).
Expressing and Experiencing Joy, Love and Gratitude
In the whirlwind of grief, one aspect often overlooked is the joy, love and gratitude that bind a family in these difficult times. Yes, an ALS diagnosis comes with inexplicable pain, but it also brings an opportunity to appreciate life, express love openly, and cherish small moments of joy that life offers. This shared expression becomes a support system and a gateway to healing and coping.
Please Reach Out
Recognizing and understanding these influences can be vital if you are in a familiaI situation involving ALS. Our team at number 702-385-6000 is available for guidance, understanding, and support. For more about the ALS sibling experience and how to cope with family grief, please navigate to our contact page. If you are seeking further reading, our blog page has numerous articles revolving around similar subjects. Allow us to be there for you in this important journey.
References
1. Platt, F. M., Boland, B., & van der Ploeg, A. T. (2012). The cell biology of disease: lysosomal storage disorders: the cellular impact of lysosomal dysfunction. The Journal of Cell Biology, 199 (5), 723-734.
2. Pagnini, F., Rossi, G., Lunetta, C., Banfi, P., Castelnuovo, G., Corbo, M.,& Molinari, E. (2010). Burden, depression, and anxIety in caregivers of people with amyotrophic lateral sclerosis. Psychology, Health & Medicine, 15(6), 685-693.
3. ALS Association. (2021). Mission and History. https://www.als.org/about-us/mission-history
4. Uchino, B. N. (2006). Social support and health: a review of physiological processes potentially underlying links to disease outcomes. Journal of Behavioral Medicine, 29(4), 377-387.