Bekah’s mysterious illness kicked into full gear when they were 14 years old. While cooking food one day they suddenly became extremely hot, fell to the floor and realized they were too weak to get back up. They were overcome by strange neurological sensations, feeling like their arm didn’t belong on their body while their vision went in and out of focus.
When paramedics arrived Bekah was convulsing on the floor. The paramedics took one look at Bekah and said this was likely anxiety, a diagnosis that would stagnate their medical care for years. As Bekah kept having these episodes and seeking help, doctors would take one look at Bekah’s chart and double down on the anxiety diagnosis without running proper tests, even as Bekah’s progressing symptoms caused them to leave school and become bedbound. Doctors told Bekah’s parents this was the worst case of anxiety they had ever seen, but refused to entertain the possibility they were missing a crucial diagnosis.
In this episode of the Major Pain podcast, Bekah shares their health journey so far. Years into the diagnostic search Bekah’s mother mentioned her own history with epilepsy, which led to Bekah’s eventual diagnosis with partial aware seizures. However, Bekah’s neurologist couldn’t account for their myriad of other symptoms, so he diagnosed Bekah with FND (functional neurological disorder) without running appropriate tests to rule out other conditions.
Bekah finally found a PCP with a personal history of chronic illness, who was the first doctor to actually listen to Bekah’s story and take their complaints seriously. Bekah was quickly diagnosed with POTS (postural orthostatic tachycardia syndrome) and ME (myalgic encephalomyelitis). This doctor also noted Bekah’s hypermobility, and believed they might have a connective tissue disease like EDS (Ehlers-Danlos syndrome). Bekah has been trying to confirm this EDS diagnosis for years, and is still in the process of finding a doctor willing to examine the possibility.
Bekah’s list of diagnoses has continued to grow, including hemiplegic migraines, a tic disorder and gastrointestinal issues. They are also an ambulatory mobility aid user, discovering that tools like a wheelchair allow them to live more fully. They are grateful their quality of life has improved since receiving better care, but are still unpacking their anger over past medical treatment. Their hope is that laws can be put in place to prevent doctors from brushing something off as ‘just anxiety’ without running proper tests. Hear their story in this week’s podcast interview.
Find Bekah and their artwork online: https://linktr.ee/Peachiichi
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