Because many with rarely diagnosed and invisible illnesses must go through months to years of appointments and testing to get a diagnosis, I often think about why we fight for one despite the constant obstacles and hurdles. For many illnesses, especially rare and complicated ones, time to diagnosis can take six years or more. It’s an arduous journey for so many of us.
I suddenly got very ill while I was working on a PhD in 2010, and since then much of my life has been spent living on what I call the Hamster Wheel of Diagnosis: make an appointment (which could take months to a year to get), do a test, make another appointment to go over the results, do another test, another appointment, then get shuffled off to another specialist to start the process over.
With
fragmented care and limited knowledge about rare conditions, Western medicine is often not well-equipped to deal with patients with complex conditions or co-morbidities. I just keep running on that wheel hoping it will eventually lead to somewhere, to more answers, to a better quality of life. I’ve filled so many vials of blood, had giant needles placed in my body, been tilted on tables, breathed into so many tubes and have been told “it’s all in your head” by so many doctors, I feel like I could start my own medical mystery world tour. Being told “it’s all your head” by medical professionals is a common experience for many with invisible illnesses, especially when you are young and female.
