- Balance Awareness Week (BAW) is 9/16-9/22
- 30% of the U.S. population has transient or constant issues with balance.
- The goal of BAW is to educate the public about vestibular disorders so people with undiagnosed dizziness and imbalance can get the help they need, reducing healthcare costs and improving quality of life.
Alicia Wolfe is 32-years old. In 2016 she was diagnosed with chronic vestibular migraine, an event that changed her life.
Two years ago, Alicia and her husband went on a trip to Japan, Thailand, and Hong Kong. When they returned, she started having terrible vertigo attacks that began with a fleeting lightheaded feeling and slowly morphed into an all-encompassing sense of spinning. Her eyes couldn’t focus properly, and she could barely keep her head up. Sometimes, Alicia felt like she was walking on clouds, or like she was incredibly drunk.
Eventually, her condition deteriorated to the point that she had to take short-term disability. Doctor after doctor was perplexed. They told her it was “just stress.” After months of not leaving the house, Alicia went to the Mayo Clinic. An ENT diagnosed Alicia with vestibular migraine, something the seven other doctors Alicia had seen never mentioned. Her doctors began treatment, and Alicia started to feel better.
When Alicia returned to work she found that she had lost her great boss and was transferred to a department that was not familiar with her condition. They moved her desk to face a busy walkway under bright fluorescent lights, which triggered her vestibular symptoms. In addition, one of Alicia’s new coworkers was verbally degrading, calling her “stupid” when her migraine symptoms and the office triggers made it difficult for her to concentrate. Alicia was overwhelmed, and her company did not respond to her pleas for help. Alicia struggled to keep up with her work while trying to manage her health. She started to see a counselor to help her manage the stress. When Alicia went for a follow up visit, her doctor advised her to reduce her work hours so her brain could rest.
Alicia filed the necessary paperwork for part-time leave according to the FMLA. Unfortunately, the Human Resources department (HR) continued to question her illness and was harsh on the requirements she had to meet. In fact, HR initially denied her request because someone hadn’t read the fax from her doctor properly. Since Alicia looked fine on the outside, management questioned her illness. They couldn’t see the times she had to lean on the cubicles to steadily guide her on her way to the bathroom. Alicia’s stress levels skyrocketed and she could feel herself sliding back from her progress.
“Alicia’s story is not unusual for vestibular patients,” says Cynthia Ryan, Executive Director of the Vestibular Disorders Association (VeDA). “Because the symptoms are invisible to others, they are often dismissed as being all in the patient’s head. Many are accused of being lazy or drunk. Because vestibular disorders are difficult to diagnose, this abuse can go on for months or years.”
After much discussion with her family, Alicia put in her two weeks’ notice. Many coworkers told her, “You’re so lucky.” What they could not understand was that she was giving up the career she had worked so hard for, simply because she had a chronic illness no one else could see.
About a month after Alicia left her job, she noticed a huge change. She was able to drive again for short periods. Four months later Alicia began to feel better, but not nearly good enough. She continued searching for answers, and found a diet that minimized her migraine triggers. Once Alicia started following the diet strictly she noticed a decrease in the number of her dizzy episodes.
Alicia has gone from being bedridden to feeling 90-95% better in a little over a year with limited medications and lots of lifestyle changes. Her mission as a VeDA Ambassador is to develop migraine-friendly recipes to help other patients learn to adapt to eating in a way that doesn’t trigger their vestibular symptoms. Alicia’s blog, The Dizzy Cook, allows her to use her creative skills while still managing her health needs.
Balance Awareness Week is the Vestibular Disorder Association’s (VeDA) annual weeklong campaign to broaden the awareness and understanding of balance-related vestibular conditions. This September, VeDA is calling for the vestibular community far-and-wide to come together and amplify a collective rally cry for public support. The goal is to make “vestibular” a household word, so patients can be more rapidly diagnosed, effectively treated, and gain the empathetic care they need from friends, family, and co-workers. And by working together, we can advance the funding, research, and policymaking needed to positively impact the lives of thousands living life without balance.
Contact: Cynthia Ryan, 503.294.9085, Cynthia.ryan@vestibular.org
About Vestibular Disorders Association
For almost 30 years, VeDA has been a highly respected source of scientifically credible information on vestibular disorders. Through our publications and online community, VeDA has reached millions of vestibular patients with critical information and support. We provide education and emotional support to patients with dizziness and imbalance. We connect patients with medical specialists through our provider directory of clinics that specialize in diagnosing and treating vestibular disorders. We advocate on behalf of all who are impacted by vestibular disorders.
