What I Wish My Supporters Would Know and How to Communicate My Needs With Haley and Tara

At #BeyondSleepy 2024 in Houston, TX, Haley Wall and Tara O'Connor discuss the difficulties they faced with communicating to their supporters while also finding the words for themselves. They discuss the tough boundaries they have had to put into place, and also the importance of just having someone check in on them.
Haley Wall is a 25 year old patient-advocate and entry-level occupational therapist living with Idiopathic Hypersomnia. She received her diagnosis in 2017, at the end of her first semester of undergraduate studies with a focus on health, wellness, and occupational studies. She graduated with her Master of Science in Occupational Therapy in May 2023. Haley has grown a social media platform under ‘The Sleepy OT’, with the hopes to spread more awareness about IH, share her story, build connections with others in the IH community and has a vision to expand the field of OT into sleep disorders as a supportive treatment. Haley has first-hand experience in advocacy both in her personal and professional life. She has collaborated with the Hypersomnia Foundation and Sleep Consortium on social media educational and awareness content, was a guest on Hypersomnia Foundation’s “Living With” UA-cam series, participated in the 2024 Externally Lead Patient Focused Drug Development (EL-PFDD): Illuminate Hypersomnia meeting with the FDA and has further plans to expand her advocacy efforts in the near future.
Tara O’Connor is a 27 year old patient-advocate for Narcolepsy and other rare disorders, EEG technician and graduated with her AAS in May 2023. She is passionate about spreading awareness after a 20 year journey to receive a diagnosis of Narcolepsy Type 1 and other health conditions. Since her diagnosis 5 years ago, Tara has been a guest on numerous podcasts, writes articles about her journey, graduated from Rising Voices of Narcolepsy program, appeared on the news for World Narcolepsy Day, and is a patient ambassador for Wakix, appearing on Wakix’s website, brochures, and ads. She’s presented on Narcolepsy and her medical journey to neuro residents at her current place of employment. She has hopes to expand her advocacy journey with the goal to speak at conferences to share her story. Tara is a proud aunt and dog mom and recently moved across the country from Iowa to Maine. She has first hand experience in self-advocacy and advocacy on a larger scale throughout her life. Although the journey through navigating life with Narcolepsy has been challenging, Tara is determined to never allow her diagnosis hold her back from what she wants to achieve in life.
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