Ménière's disease is a long-term progressive vestibular disorder that affects approximately 0.25 percent of the U.K. population and 0.2 percent of the U.S. population. It is characterized by unpredictable episodes of vertigo, aural fullness, tinnitus, sensorineural hearing loss, and, for some, hyperacusis. While episodes of vertigo are often the most dramatic and traumatic experiences for affected individuals, our in-depth qualitative study of the impact of Ménière's disease on everyday life highlights the deeply challenging process of adjusting to life with sensory uncertainty and fluctuating soundscapes (Soc Cult Geogr. 2016 http://bit.ly/2bYG5OQ).
Drawing on 28 in-depth narrative interviews with Ménière's patients and their family members in the southwest of England, our study examined how and why people's day-to-day lives are both disrupted and re-choreographed following the onset of this chronic illness. Specifically, we explored how patients and their families adjust to a “routinely unpredictable” life, developing new sensory competences, engaging in emotional safe-keeping, and reframing the meanings of previously taken-for-granted everyday practices (Sociol Health Ill. In Press http://bit.ly/2e4cBAx;Soc Sci Med. 2016;166:177 http://bit.ly/2b9MyoK).
Several aspects of participants’ shifting soundscapes emerged as particularly important in shaping the emotional transitions encountered with the onset and progression of the condition (Soc Cult Geogr. 2016 http://bit.ly/2bYG5OQ). First, participants discussed the challenges of hearing life in 2D—adapting to distorted sound and loss of sonic directionality that compound the general sense of disorientation and imbalance already experienced by people with Ménière's.
Second, participants noted the distress caused by overbearing sensations of tinnitus. While some felt able to acclimatize to these sonic intrusions over time, others described their intense frustration from a lack of sonic respite as the sheer volume, variation, and unpredictability of tinnitus tones compromised their efforts to do so. This distress was magnified for participants who also had hyperacusis, such that loud or sudden sounds created a wall of sound that aggravates the tinnitus and brings it back into focus. These sound walls were often encountered in previously taken-for-granted social settings, including restaurants and shops, where discordant sounds of clattering cutlery, scraping chairs, and social conviviality led to feelings of discomfort, exclusion, and withdrawal. Anxieties were intensified by a lack of perceived control, both over problematic sound sources and the resulting symptom expression.
Anxiety was a pertinent emotion throughout participant accounts, particularly as many had come to associate irregular shifts in tinnitus tone/volume and sudden declines in hearing capacity with more active phases of the condition (i.e., more severe and/or recurrent episodes of vertigo) and indications of condition progression (e.g., to a bilateral state). This awareness provoked a complex mix of anxiety and empowerment; while recognizing symptom changes enabled participants to protect themselves from potentially risky situations such as driving, they knew of limited means to prevent symptom deterioration.
STRATEGIES TO REGAIN CONTROL
In the face of an unpredictable condition, surrounded by ever-changing sonic environments, participants described several strategies to regain a semblance of perceived control over their distorted soundscapes. These included:
- the use of sensory prostheses, such as hearing aids, directional microphones, and other personal hearing solutions, which offers some degree of assistance in quieter acoustic settings;
- deliberately shifting their spatial and temporal routines to minimize exposure to crowds and intrusive sonic atmospheres; and
- learning to be more confident in raising awareness of their auditory needs to reduce the anticipated stigma of not hearing or responding to people as might be socially expected.
Overall, the study highlighted the significant, and often somewhat debilitating, emotional transitions negotiated by people as they try to understand and adapt to the changing soundscapes encountered with the onset and progression of Ménière's. It calls for greater efforts to promote inclusive acoustic comfort when designing public spaces (indoor and outdoor) and for campaigns to raise awareness of alternative sonic worlds, respecting the “ears and voice” of people living with varying levels of auditory sensitivity.