After multiple primary care doctors acted like I was a conspiracy theorist for pointing out that graded exercise therapy has been debunked as a treatment for chronic fatigue, I was elated to find a doctor who took my concerns seriously. It sucked that I was about to move states, which would obviously necessitate switching doctors again, but I hoped we could run some meaningful tests before my move and find the root cause of the problem.
The more my doctor and I talked, the more we zeroed in on two potential causes for my fatigue and other symptoms: an Epstein-Barr infection that was lasting months longer than it should have and multiple sclerosis. The former was evident in my bloodwork. The latter was just a suspicion; it would take a brain MRI to confirm or deny.
Just a suspicion, but it seemed likely. I had so many of the symptoms: double vision, tingling in my limbs, fatigue, increased clumsiness, worsening memory, and increased depression. And I had most of the risk factors: I was assigned female at birth, was of Northern European ancestry, was between 20 and 40 years old, and had been infected with Epstein-Barr.
Coordinating a brain MRI with insurance while navigating the logistics of a cross-country move was no picnic, but I managed to get the MRI within a week or two of arriving in my new state. And then I waited. I told my partner, some friends, and my sister about the test, but not my parents. I didn’t want to worry them before knowing anything for certain.
The MRI came back normal.
Obviously, I’m glad not to have multiple sclerosis. A degenerative disease would not be my first choice of illness to explain my chronic fatigue and other symptoms. But also, I would like to have an explanation.
There’s a brilliant Tumblr post from natalieironside that says, “A doctor saying ‘Good news! Your labs look great’ is like if you were watching a cop show and the chief walked in like ‘Great news, everybody! The best news! The killer is still at large and we have no leads.’”
We go to the doctor and ask for tests because we know that we are sick. The question is not if we are sick, and a negative test result doesn’t mean we’re not sick. We are sick; the question is what type of illness we have and how we can treat it, and a negative test result is a big stinking “I don’t know” that we’re often expected to perform happiness or relief about. Isn’t it good to not know? Isn’t it good to have no leads?
No. It’s not.
Having no leads doesn’t mean we’re fine. It means we’re sick but have no treatment plan. It means we’re sick but are more vulnerable to medical gaslighting. It means we’re sick but can’t prove it to the gatekeepers who decide whether we get more tests, treatment, medical equipment, or other forms of help. The United States’ disability safety net is woefully inadequate, but without a diagnosis, you usually can’t access any institutional help at all.
So this is a call to doctors, family members, and friends of people with chronic illnesses: do not celebrate negative test results. Do not ask the chronically ill people around you to perform happiness or relief when they’re told they need to continue living with uncertainty and without treatment.
The fact that the killer has not been caught does not in any way diminish the fact that there’s been a murder.
Linnea Peterson (they/them) is a queer, disabled writer from Minnesota. Their work has been published by Duck Prints Press, FLARE Magazine, and Five Minutes and has been nominated for a Genrepunk Award. Their first book, a young adult novel called The Girls Will Be Okay is forthcoming.
Website: linneapeterson.com
Instagram: @lpetersonwrites
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Bluesky: @lpetersonwrites.bsky.social