“But you look so healthy, I’m sure you’ll be fine.”
You would never know that I have a disability from just looking at me. To most people, I appear to be healthy and well-adjusted for my age. Enrolled in a doctoral clinical program, doing well in my coursework, taking on extra curricular activities – from an objective viewpoint, it is easy to assume that I lead a similar life to most people my age in my situation. Yet the very fact that things seem normal is one of the most challenging aspects to an invisible disability. Unless I go out of my way to explain it, you would likely never know that I suffer from severe tinnitus and hyperacusis, or constant ringing in the ears and extreme sensitivity to sound.
“Oh I get tinnitus sometimes, too. You should just ignore it like I do.”
Although increasingly common, issues of tinnitus and hyperacusis are not widely understood, nor is there a clear way of measuring what makes someone’s condition severe (Blasing, Goebel, Flotzinger, Berthold, & Kroner-Herwig, 2010). Unlike hearing impairment, in which the limitations of hearing are objectively measured by a hearing test, the methods for measuring tinnitus are far more subjective. Therefore, people tend to measure tinnitus severity by the amount of stress that people who encounter it experience – tinnitus generally falls into the basic categories of bothersome and non-bothersome. For the bothersome type, there are several remedies with an evidence basis, including various audiological interventions that incorporate psychoeducational counseling (Chan, 2009).
Additionally, Cognitive Behavioral Therapy (CBT), Acceptance and Commitment Therapy (ACT) and Mindfulness-Based Stress Reduction (MBSR) protocols have all been shown to alleviate tinnitus-related distress to varying degrees (Gans, Cole, & Greenberg, 2015; Hesser, Westin, Hayes, & Andersson, 2009). Yet once all of these have been attempted, and the person experiencing the tinnitus and hyperacusis is still not well, current available interventions have little else to offer. Having founded a support group in Palo Alto that is part of a national network and witnessing the pain and despair tinnitus can cause firsthand, I can personally attest to the widespread need for more effective treatments and interventions.
“Sorry, but I can’t lower the music volume because the other customers want it turned up loud.”
The challenges I face with tinnitus and hyperacusis have impacted every area of my life. While providing me with a sense of mission to contribute to research and advocacy for individuals with my condition and other invisible disabilities, the path to get there has been thoroughly demanding and challenging. Simple things like riding on public transportation, food shopping, and being in noisy restaurants are all potentially painful situations for me. Urban environments are also dangerous, considering the regularity of emergency vehicle sirens, construction, car horns, loud motorcycles, and other frequent noise. At a more personal level, I have even had to tell people that their voice or laugh is too loud, and ask if they can speak more quietly when I am nearby. Frequently, my conditions become exacerbated if I do not have an opportunity to advocate for myself and explain to people the unusual nature of my sound sensitivity so that it may be accommodated.
“If the class gets too loud for you, you can just leave.”
While I am grateful to be engaged in a course of study that I am passionate about, it is a constant challenge to maintain an effective balance between self-care and productivity. Graduate level training in psychology is thoroughly demanding of a person’s physical and emotional resources, particularly considering clinical placements that may require long commutes on top of endless hours of coursework and research requirements. My condition results in frequent exhaustion and difficulty sleeping, with the symptoms often intensified resulting from stress and demands of graduate school. Excessive fatigue is common when someone experiences a disability (Olkin, 1999); by sheer requirement of rest alone, it takes more time to get the same amount of things done. In my case, many aspects of my training are limited and guided by my condition, starting from choosing a school that has parking access and adequate disability resources. Other aspects of the process are restrictive for me too, as clinical training placements involving families with small children and milieu settings with youth are frequently quite loud and therefore not compatible with my illness. Even socializing can be a challenge, as my condition is worsened from time spent in large groups of people in which many conversations are happening. I must rely on my professors, supervisors, and peers to understand and help when I need accommodations for my disability, and even when I must leave a potentially harmful situation for me.
“Oh come on, this can’t be too loud, we’re just having fun.”
Explaining this is frequently difficult. When it’s people’s lifetime experience that being in social situations is a good thing, and they display the best of intentions by wanting me to be there. It can be very hard to articulate how challenged I am by being in the places where people gather such as restaurants, parties, and bars. As such, I am left out of much social activity that I used to partake in and that used to be a resource for me – having a disability requires constant re-adaptation to life, and often in isolation from others.
Diversity factors among graduate students include all the varied forms in which disability manifests. While mobility issues obviously must be accounted for, greater awareness of other types of disabilities, including less visible, chronic disabilities such as endometriosis, Crohn’s disease, irritable bowel syndrome, brain injury, fibromyalgia, and other common conditions such as tinnitus and hyperacusis still require greater awareness among the general public. In this time when diversity is becoming an ever more present dimension of clinical proficiency, it is essential that training programs incorporate greater awareness of the potential impact of disability on people’s lives.
“Well, at least you don’t have a real disability.”
Despite the challenges my disability has put me through, it has been my experience that people truly want to help – even when they aren’t sure how. Yet sadly, often it is the case that when things become too challenging to attend to, it is a culturally consistent reaction to tend to look away. Many of the needs of people who experience limitations due to their disability may be solved by a very simple method – don’t be afraid to ask what it’s like for them, and how you may be able to help. Even just being recognized for dealing with the challenge of an invisible disability can be a huge relief.
About the Author:
Ben Greenberg is a fourth-year doctoral clinical psychology student at the American School of Professional Psychology at Argosy University, San Francisco. A former professional symphony French horn player, he played in the Colorado Symphony Orchestra, Jerusalem Symphony, Hong Kong Philharmonic, and Cairo Opera Orchestra before leaving his career due to debilitating tinnitus and hyperacusis. He is currently a grant recipient of the American Tinnitus Association for his research in the impact of sound sensitivity in tinnitus, and lives in Oakland, CA.
References:
Blasing, L., Goebel, G., Flotzinger, U., Berthold, A., & Kroner-Herwig, B. (2010). Hypersensitivity to sound in tinnitus patients: An analysis of a construct based on questionnaire and audiological data. International Journal of Audiology, 49(7), 518-526. doi: 10.3109/14992021003724996
Chan, Y. (2009). Tinnitus: Etiology, classification, characteristics, and treatment. Discovery Medicine, 8(42), 133-136. Retrieved from: http://www.discoverymedicine.com/Yvonne-Chan
Gans, J., Cole, M., & Greenberg, B. (2015). Sustained Benefit of Mindfulness-Based Tinnitus Stress Reduction (MBTSR) in Adults with Chronic Tinnitus: a Pilot Study. Mindfulness. doi: 10.1007/s12671-015-0403-x
Hesser, H., Westin, V., Hayes, S. C., & Andersson, G. (2009). Clients’ in-session acceptance and cognitive defusion behaviors in acceptance-based treatment of tinnitus distress. Behavior Research and Therapy, 47(6), 523-528. doi: 10.1016/j.brat.2009.02.002
Olkin, R. (1999). What psychotherapists should know about disability. New York: Guilford Press.
This letter is from Dr. Philip G. Zimbardo. Dr. Zimbardo is the Professor Emeritus of Psychology at Stanford University, two-time past president of the Western Psychological Association and past president of the American Psychological Association. He became known for his 1971 Stanford Prison Experiment and has since authored numerous psychology books, text books and other notable works, including The Lucifer Effect, The Time Paradox and The Time Cure. He is also the founder and president of the Heroic Imagination Project.
This letter is from Mitchell Prinstein, PhD, ABPP. Dr. Prinstein is the John Van Seters Distinguished Professor of Psychology and the Director of Clinical Psychology at the University of North Carolina at Chapel Hill. Mitch’s research examines interpersonal models of internalizing symptoms and health risk behaviors among adolescents, with a specific focus on the unique role of peer relationships in the developmental psychopathology of depression and self-injury. He is the PI on several past and active grants from the National Institute of Mental Health, the National Institute of Child and Human Development, and several private foundations. He serves as the Editor for the Journal of Clinical Child and Adolescent Psychology, and is an editorial board member for several developmental psychopathology journals.