Barbara was 36 and pregnant when she began having blackouts and trouble remembering what she was doing. In 1999, she was diagnosed with severe narcolepsy and cataplexy and has since struggled with symptoms such as memory loss, depression, anxiety, and what she calls “brain fog” which makes it difficult for her to concentrate and remember things like people’s names. Barbara also suffers from automatic behaviors which occur when her brain falls into a semi-sleep state causing her not to remember completing tasks. Barbara worked as a nurse but decided to give up her license after her doctors told her she could make a mistake and end up hurting her patients. She couldn’t trust herself to do her job safely and, for instance, not double medicate a patient. She has been on medication for the past 20 years, but its effectiveness is wearing away. Unfortunately, the other medications for her conditions don’t work, and her doctor can’t increase the dose of medication she’s on currently due to the dosage requirements and concerns about side effects.
Barbara did everything she could to find another job but was continually rejected by employers after being honest about her conditions. She didn’t want to go on disability but had three kids depending on her for food, clothes, and a roof over their heads. She didn’t have any other options. Before being granted disability, Barbara had exhausted her savings and sold most of her belongings to pay her bills. After seeing three different judges, she finally won her disability case and now receives $1,039 per month to live. Yet, Missouri considers that too much money to qualify for Medicaid or Medicare, so Barbara has a $158 monthly spend-down that she must use on medical expenses each month in order to qualify for insurance coverage.