When Your Labs are Normal

“Hmm,” she says, shining a light into my eyes. “Let’s do labs for Myasthenia Gravis.”

I had heard of MG, but hadn’t ever researched it more than a quick google search, just to find out what it was. My mother thought she had it last year, so while I wasn’t completely unaware of this specific autoimmune disease (I am in the chronically ill community, afterall), it wasn’t really ever on my personal radar.

The swallowing issues were what brought it to the table. I thought it was my Multiple Sclerosis, as I’ve always read that dysphagia is a symptom of MS. But when speaking to my specialist and another neurologist whom I was seeing for a hot second before switching back to my old MS Specialist (it’s a long story, maybe I’ll tell it sometime), they both agreed that MS only causes dysphagia in patients with “severe motor disability.”

That felt dismissive enough and ableist in ways I can’t even begin to process.

But when we talked about my symptoms: swallowing issues so bad I’m at risk of choking every time I eat, jaw and mouth fatigue so intense I can’t eat or talk sometimes, and the ever-persistent fact that these things seem to get worse in the evening … something else seemed to pop up out of nowhere: Myasthenia Gravis.

When she looked into my eyes, she made a face. A face of concern, or perhaps confusion. I was never explained what she saw in my eyes that elicited that face, but after reading and speaking to people with MG, it was probably something like droopy eyelids or double vision.

And after figuring out the context on my own, I remembered that in recent pictures, I noted I look drunk, even though I don’t drink anymore. The reason? My eyelids were droopy. So it all started to make sense!

“It’s pretty rare to have both MS and MG,” she said. I think she thought she was comforting me.

But as a disabled person with more chronic illnesses than I can count, that isn’t comforting at all. When symptoms arise and there is nothing anyone can do, it feels like not being believed. And truthfully? We’re not believed. Often. Like, it’s so common we all have our own method of trying to get doctors to listen to us.

If you’re disabled and/or chronically ill, what is your system for being listened to? Do you have a system? Do they ever actually listen?

Please comment below. I am so curious what other people’s routines are. And if none, I’d still like to commiserate over how dismissive doctors are.

I did the bloodtest a few days later, and waited.

And waited.

And waited.

If you’ve ever done a Myasthenia Gravis Profile, you know that it’s not your average set of labs that show up on MyChart within a couple days, if that.

No, unfortunately, MG Profiles take forever. Weeks, even. In my case, almost a month.

In that time I did tons of reading on MG and even joined a support group online.

Everything I read started to make sense.

Things clicked into place that had never seemed to fit in anything else before.

The swallowing issues. The jaw and mouth fatigue. The inability to speak at times. The increasing exhaustion and pain around 6pm every night. How it’s become difficult to look up …

It all led to one thing: I definitely have Myasthenia Gravis.

I knew that 10-15 percent of all MG patients have what’s called “seronegative” lab results, which just means their labs are normal but they have MG anyway.

Unfortunately in my experience, once labs are negative, doctors don’t seem to want to push very hard after that.

Especially in this case, when my MS Specialist was just trying to rule out MG, not exactly diagnose it.

But I was confident that at least one of the tests on the profile would come back abnormal. Especially for how long it took—there had to be a reason why.

When I woke up at 4am with a notification that my results were ready, I jumped out of bed and nearly tripped. I bolted to the bathroom: mostly to pee, but also so I could concentrate on reading.

And I’m sure by the title of this piece, you can guess what it said …

AChR Binding: normal.

AChR Blocking: normal.

AcHR Modulating: normal.

MuSK: normal.

Striation: negative.

A month of waiting, sitting by the phone, checking the apps every few minutes, reading, and reading, and reading … just for it to be negative.

People without chronic illness will probably read this and say, “so what’s the problem?”

Most people want normal labs. But when you’re chronically ill and disabled, “normal” labs mean only one thing: that you suffer in silence.

Normal labs do not mean you don’t have a disease.

Normal labs do not mean your symptoms are wrong.

Normal labs do not mean you were wrong about your own body.

But normal labs do have the tendency to make the doctor think everything is fine.

But it’s not fine. And I’m tired of pretending I’m fine. (No thanks, Katy Perry, but I’m gonna shout from the rooftops next time I’m “not fine”. No more saving my reaction to appease other people.)

The truth is, labs can feel like bullshit. Because sometimes they are bullshit.

We know when it comes to certain tests, like with PCOS or anything related to the uterus, ovaries, or anything a non-cis man might have … they don’t even do the right tests. Even the name implies something about the disease that isnt’ even true or necessary for diagnosis.

Thyroid labs are notoriously basic when you need more specialized tests to see what’s going on.

Symptoms and signs get left to the wayside because doctors won’t even order every single test that needs to be done. And no, I don’t mean “why can’t we just have a full-body scan that will tell us everything?”—I mean they literally don’t add all the proper blood tests to lab profiles that are needed to spot tricky or underlying disease.

They do the baseline. Always. And when your baseline is “normal”? They just forget about you.

I truly wish that this was the only time this had ever happened. That a singular, annoying, moment drifted by without ever making an appearance again.

But of course that’s not the case.

Of course it’s happened before. And it will happen again.

Chronically ill people understand that this, in fact, happens all the time.

But why?

Why is it so common for lab results to come back “normal” or “negative” when the symptoms still exist? How come it happens so often, people have to prep their doctors and themselves for lab orders? Why is it so “normal” to be dismissed, discarded, and thrown away?

Are doctors under the impression that negative labs means all of a sudden we’re cured? What are they teaching in medical school if not to actually try to help? What is the point of becoming a doctor if you hate people and want them to suffer?

Okay, okay, maybe I’m being a little hyperbolic here. But it’s also not completely untrue, either.

How many of us have dealt with a rude, gaslighting, dismissive doctor in the past? I’ll wait for an answer but I’m pretty sure every disabled and chronically ill person reading this will have at least one or two stories. Probably at least five. Because while the able-bodied and healthy folks think doctors are our saviors, those of us who have actually been in close proximity with them for varying lengths of time will understand that we live in a different world.

Doctors are not our saviors, they’re more like guards of progress—holding the power to grant access, or deny entry.

They can help guide us along the path, or they can block us from finding out more. Ans unfortunately, when labs come back “normal”, that just gives them more reason to deny entry to the progressive path of knowing your own body.

Sometimes I think they like to think they know us better than we know ourselves. Sometimes, I think perhaps they enjoy when our labs come back normal even with excruciating symptoms, so that they can rub it in our faces that they were right and we were wrong.

Did I ever tell you about the time a doctor looked me in my eye as I was crying about being dismissed by the hospital, handed me a tissue, and said, “what you need to understand is that we went to medical school and you didn’t.”? No? Remind me to tell you that story one of these days …

But that’s the thing … we’re usually not wrong. Not about our own bodies, at least. Maybe we don’t have all the information. Maybe we don’t know all the signs. Maybe we thought it was one disease when it was actually another. But without proper testing, without proper care, without proper doctor-patient relationships, how can we continue to survive like this?

Maybe it’s not that we’ve exaggerated.

Maybe doctors are just wrong.

Maybe we do know ourselves.

Maybe the labs just don’t work.

And if this is such a common occurence—if it is so “normal” to get back negative labwork when the unknown diseases still fester inside of us …

Maybe the problem isn’t us.

Maybe it’s the labwork itself.

If it can’t detect things that lay under the surface, then maybe it’s obsolete.

Maybe, just maybe, we need to throw away the whole test.