I Am…Living in a Diagnostic Wilderness
Many people with multiple sclerosis (MS) spend months or years waiting for answers while their bodies tell a story medicine is still working to understand. This piece reflects our members' experiences of living in that diagnostic wilderness — and why community can make that journey less lonely.
Mine is the brain "covered in lesions — exactly where lesions should be if you have MS" — and still the words come back: not ready yet. Not ready yet. Two years of not ready yet, while the body keeps its own schedule, indifferent to what the doctor is ready for.
I am the diagnostic wilderness — that unmapped territory between something is clearly wrong and here is what it is. A place where the MRI is read, where the radiologist writes pages, and the neurologist says "we'll discuss it at your next appointment." Six months away.
I am the inflammation marker that will not rise. The CRP that stays quiet while the lesions multiply. I am the paradox lodged in the literature: inflammation that lives in microscopic spaces, in lymphocytes seen only under a biopsy lens, in a body that runs hot inside and reads cold on every standard test.
I am untreated while symptoms multiply.
I am the space between clinically probable and officially diagnosed. Between the disease and its name. I am the mixed bag, or the interesting case the resident gets to study.
I am all the autoimmune conditions arriving one by one. Uninvited. Lupus and Sjogren's and psoriatic arthritis, each one real and joining MS. The physician says, "you've got a lot going on."
I am the person affected by MS. I am dealing with this new normal. This new landscape of uncertainty.
I am the community to ensure you are not alone.
March is Multiple Sclerosis (MS) Awareness Month, dedicated to raising awareness for the chronic autoimmune disease that affects the central nervous system by damaging the protective sheath of nerves. If you are between clinically probable and officially diagnosed, between the disease and its name, join our online community at Smart Patients.
If you’d like to contribute to MS research, visit our friends at iConquerMS.org, where people living with MS help shape research priorities and advance new studies.