Advocacy fatigue and Usher syndrome

May 10, 2024

On Well-Being | Acknowledging stress associated with self-advocacy: A parent and mental health provider perspective

byRya Freeland, MSW

My child has been praised for their self-advocacy skills ever since they were a toddler. We as parents, have been advised that their ability to self-advocate will greatly impact their success in mainstream environments. I greatly believe in the strength of self-advocacy, which is defined as “the ability to assertively state wants, needs and rights, determine and pursue needed supports.”1 The ability to understand one’s individual needs and confidently convey them is reflective of personal insight, agency and empowerment. I can also imagine it can feel overwhelming, stressful, and perhaps a bit isolating. While discussing the subject with my 8-year-old, they reported “I can do it, but sometimes it gets tiring. I wish people would just understand sometimes.” As a parent, I have proudly witnessed my child’s seemingly advanced ability to share their perspective and experience. I have also wondered what it is like to have that expected of you.

Usher syndrome is classified as a rare disease. A 2023 study of the awareness of Usher syndrome among allied health professionals showed limited education in training around Usher syndrome and the needs of the patients who have it. This results in missed opportunities for diagnosis, treatment and referrals2. This was our family's experience. Late diagnosis, navigating multiple healthcare systems with little to no knowledge of Usher syndrome, missed symptoms and improper treatment. The strain of advocacy for the individual and families can feel discouraging.

Basas, 2015 defines the concept of “advocacy fatigue” as the increased strain on emotional, physical, material, social, and wellness resources that comes from continued exposure to system inequalities.”3 Although, not characterized as a mental health disorder, advocacy fatigue, like the concept of burnout, can present with stress-induced symptoms. Some include emotional exhaustion, feelings of hopelessness, lack of motivation and feelings of defeat as well as somatic symptoms.4

As a mental health provider, I understand that multiple feelings can be true at the same time. In this case, it is possible to both value and uphold the ability to self-advocate while sometimes needing a break. Understanding your limits and signs of stress are ways in which you can learn to set boundaries and incorporate stress reduction skills before you become overwhelmed. Exploring the physical, emotional and cognitive impacts can help you determine what basic needs you need to nurture – like breathwork, sleep, movement, nutrition, and incorporating grounding and mindfulness techniques5. Asking for support through community-based advocacy groups, peer advocacy programs, or organizations such as the Usher Syndrome Coalition, is a great way to increase connection and address feelings of isolation. Additionally, increasing awareness through policy change and research advocacy will help with systematic understanding and inclusion to ultimately lessen the burden on the individual.

I believe that community plays a pivotal part in coping and that we were not meant to do it all on our own. Individually you can manage symptoms by focusing on what it is you can control. Collectively, you can access validation, shared experiences, functional support and strength in numbers.

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