Many children beg their parents for a pony, but Caitlin actually made that dream a reality. She wasn’t allowed to have a pony until proving she could afford one and look after it by herself, so as a teenager she bought one in secret, finally informing her parents 10 months later when the proof of her readiness was irrefutable. Now she is applying that same tenacity towards understanding her own mysterious chronic illness. Although a few pieces of her health puzzle have fallen into place, huge questions and frustrating obstacles remain.
In this episode of the Major Pain podcast, Caitlin talks us through her complex health situation. She is currently diagnosed with POTS (postural orthostatic tachycardia syndrome), gastroparesis, and is dealing with chronic pain from a spondylolisthesis. This is a condition in which a vertebrae in the low back slips out of place, which Caitlin discovered after falling off a horse in 2010. She has hypermobility, but isn’t sure if it is caused by HEDS (hypermobile ehlers-danlos syndrome) or hypermobile spectrum disease. At one point she was diagnosed with ankylosing spondylitis, but remains unsure if this diagnosis is accurate. She also has mysterious neurological symptoms currently diagnosed as FND (functional neurological disorder) but members of her care team disagree on this diagnosis. To make matters worse Caitlin is experiencing horrific gaslighting from medical professionals, including being tricked into taking medication in an attempt to prove she was lying about symptoms. She shares the deep frustrations of being disrespected, devalued and disbelieved, while finding strength to continue advocating for care.