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by Claire Haddad
Living with chronic dizziness and imbalance as a result of a vestibular disorder can be both physically and psychologically disabling. Eventually, most people find their way to a doctor who can provide a diagnosis, although some may remain without a definitive diagnosis. While the physical symptoms of a vestibular disorder usually can be addressed, the psychological challenges can be overwhelming and often go unchecked.
I knew all of this first hand when two women approached me in the summer of 2002 to ask if I would start a support group in the Boston area for people with vestibular disorders. By that time, my own dizziness had improved greatly since I was diagnosed with viral labyrinthitis in 1996. But I had not forgotten the difficult days when for three years, I tried to work with physical imbalance as an investment analyst at a large mutual fund company while in my mid-twenties.
No one understood how I could have symptoms of dizziness while working seated at my desk. This was not something I discussed often with a largely unsympathetic group of co-workers. As a financial analyst, even more challenging were the cognitive lapses that I seemed to be having with poor memory recall and a lack of concentration. In addition, I had unending fatigue caused by the miss-signals being sent from my damaged inner-ear (vestibular) system to my brain, coupled with the drowsiness from my medication.
Family and friends tried to show sympathy, but from time to time, their doubts about the reality of a vestibular disorder would surface. Early on, my father believed that a psychological problem must be causing my imbalance. Even a friend admitted years later that she wasn't convinced about my dizziness until she saw me swaying while trying to stand for a prolonged period of time.
After three years of battling my symptoms, my dizziness forced me to file for disability from my employer. Initially rejected for long-term disability, I felt defeated. Even the lawyer handling my disability appeal stopped returning my calls. However, after multiple appeals (which I wrote myself) spanning 14 months, I won my disability case. By that time, my dizziness had improved to the point where I returned to the financial industry five months later.
True, I had a depth of personal experience with my own vestibular disorder. In addition, I had learned more about vestibular disorders when I became a Board member of the Vestibular Disorders Association (VEDA). But how could I lead a support group for others? My first thought was that I was not qualified. I wasn't a psychologist or a social worker.
Years ago, I had attended a support group twice until my work schedule made it impossible to attend. Then I had one-on-one meetings with the support group leader who was a psychologist with a thorough knowledge of vestibular disorders. In my mind, she was a truly qualified person to run a support group. I couldn't help but compare myself to that high standard I had known in my own support group leader and that left me feeling inadequate.
Nevertheless, I felt a determination to help others avoid some of the unnecessary emotional pain that I experienced when first diagnosed with a vestibular disorder. After deciding that I would indeed start the support group, I started to educate myself. I read books on how to run a support group. Also helpful was a support group starter kit from VEDA. Next, I had to publicize the group. I wrote letters to doctors' offices who treat people with vestibular disorders asking them to post a flyer about the support group in their offices. VEDA, which serves as a hub for vestibular disorder support groups, also posted the support group on its resource lists and Web site.
To my surprise, eighteen people attended the first support group meeting in a local hospital's conference room. The meeting confirmed the need for such a group and I never doubted myself again about being "qualified" to run the group.
Nearly four years later, the support group has served people representing a range of disorders such as Meniere's Disease, viral labyrinthitis, vestibular neuritis and benign paroxysmal positional vertigo. Different disorders often exhibit different symptoms. Some common symptoms include dizziness, vertigo, unsteady gait, varying levels of hearing loss, tinnitus, visual sensitivities, and cognitive impairments. An important part of leading the group is to explain to members that not everyone experiences the same set of symptoms. In addition, I have to make sure that members understand that not all therapies help all vestibular disorders. For example, a low-salt diet may minimize the symptoms of a person with Meniere's Disease, but have no effect on other vestibular disorders.
A recurring theme of the support group is "living with an invisible, chronic illness." The invisibility of a vestibular disorder tends to limit the amount of sympathy and can lead to doubt about the diagnosis from friends and family. The chronic nature brings constant interference with the demands from family and work life. One group member recently told me that her vestibular disorder has been much harder to deal with compared to her past treatment of cancer, an acute and often visible disease that typically elicits more sympathy and support.
As a group, we grapple with questions such as, "To what extent does a person educate others about his/her vestibular disorder?" Sometimes confidentiality of one's disorder at work is preferred over trying to elicit sympathy from co-workers by educating them.
The biggest challenge as a support group leader is keeping the meeting interesting for an ever-changing audience. For example, some people may come to the group once. They seek validation as they meet others who are struggling with chronic dizziness and imbalance. Other members may come regularly for a limited period of time until they feel they've received the support they needed. Finally, a handful of people continue to come for more than a year or two.
The support of the group does not end when the meeting is over. Many group members have volunteered to help others outside of meetings. For example, some members have been through the grueling process of filing for disability from the Social Security Administration. Often rejected the first two times, they understand the gravity of trying to explain their vestibular disorder to a Social Security judge on their third and final appeal in court. As support group leader, it's my job to put members in touch with each other who can give invaluable advice.
Some people cannot attend the support group meetings because of disability or work schedule. I often give advice by phone and email to these members. Sometimes, the name of a trusted physician is all a person needs to seek a second opinion and may never come to the group meeting.
Initially, what scared me the most about running a support group was not having all the answers. But I've found that it's fine not to have all the answers and that the group looks not only to me, but also to the other members for the support they need. It's a collective effort that can make a difference in their lives as they seek to address the psychological challenges of their vestibular disorders.
Want to start a support group? Find out how through the Vestibular Disorders Association. |
