Jason, now in his 40’s, has been struggling with sleep problems since suffering a traumatic brain injury at the age of 12. Due to the complex nature of the fallout from this injury, his sleep disturbance was largely viewed as a component of the neurological damage he had suffered. He underwent a sleep study in 2016, but the results showed that he tested below the threshold for Obstructive Sleep Apnea. When he completed a repeat sleep study in September 2020, he was found to have mild obstructive sleep apnea with hypoxemia, or a below-normal level of oxygen in the blood. He was recommended to use a Continuous Positive Airway Pressure (CPAP) therapy machine with the hope that this would help to maintain healthy oxygen levels during the night. He felt no difference in the quality of his sleep when using CPAP, nor in his daytime symptoms, leading him to become discouraged. He moved 3 times and with each move, his new medical providers emphasized the importance of using his CPAP.
Jason often reported poor subjective quality of his sleep at his follow-up appointments, which were a stark contrast to objective data illustrating his adequate CPAP adherence and normal blood oxygen levels. When he addressed this discrepancy with his medical provider, he was met with a defensive attitude and no alternative solutions. Jason felt distressed and belittled, and his perception was that the individuals in charge of his medical care showed little concern for his experience of sleep. He grew increasingly frustrated with the suggestions to change the pressure settings on his CPAP or for him to lose weight. Repeated conversations about his weight in relation to his sleep problem were perceived as “fat-shaming,” which he says has been a common occurrence on his sleep journey. He used CPAP for 3 years and noticed no discernable difference in the quality of his sleep, nor in how he was feeling during the day. He eventually made the decision to discontinue use of his CPAP therapy and says that his medical provider responded to this decision with the question, “Do you want to die young?”
After 9 months, he resumed using CPAP and nighttime oxygen in the hope that he might have a different experience and continues to use these therapies today. His significant insomnia symptoms are the primary focus of his visits at The Insomnia Clinic and he is engaged in Cognitive-Behavioral Therapy for Insomnia (CBT-I). He appreciates being able to talk about his experience of sleep and the challenges he faces related to having Comorbid Insomnia and Sleep Apnea (COMISA). Looking back on his journey, he wishes that his interactions with medical providers had been more collaborative and that their approach had been outcome-centric, rather than treatment-centric. His hope is that sleep disturbance will one day be viewed as a public health issue and treated from a multidisciplinary perspective.
