When Every Doctor Says Nothing Is Wrong

SELF-ADVOCACY  ·  10 MIN READ

I was handed a pamphlet about migraines while I was sitting in a chair, struggling to see out of my right eye.

I want you to picture that with me. The day before, my vision had gone completely black. Nothing at all out of that eye. By the time I was sitting in front of him, it had come back to something like looking through water, and I could not make it resolve no matter how long I stared. I had already been to emergency, where they told me it was probably a migraine. Now I was in front of an eye specialist, the person who was supposed to be the answer, and he looked through his instruments and told me there was nothing wrong.

Then he gave me the pamphlet.

I read it while he sat there. And I remember saying to him, carefully, because I did not want to be difficult, "What you’re describing here is not what I’m having. I’ve had migraines before. This isn’t that."

He said he didn’t know what to tell me. Nothing was showing up.

I saw three different doctors about my eye. My family doctor included. Every one of them said the same thing.

Eleven years later, a neurologist would point at a scan of my brain and show me a lesion that lined up exactly with that eye. That episode had a name all along. Optic neuritis. It was the first sign of multiple sclerosis, and it sat there in my file for a decade wearing the word migraine.

The years before the pamphlet

Here is the part I didn't understand until much later: the pamphlet wasn't the beginning.

In my early twenties, I was in pain. Regular, ordinary, background pain that I assumed everyone had. I remember asking my friends about it. I remember asking my family. I would say something like, does your body hurt? And they would look at me with genuine confusion. No. What do you mean? I remember the look on their faces so clearly. And I remember filing it away as nothing.

That is what I want you to hear, if you are somewhere near the beginning of this.

It rarely starts with a dramatic moment. It starts with a small piece of information your body hands you, and you set it down, because nobody around you seems to think it’s worth picking up.

The word that cost me fifteen years

If I had to name the thing that did the most damage, it would not be any single doctor. It would be one word.

Just.

It’s just stress. It’s just your age. It’s just that you’re tired. It’s just the weather. It’s just hormones. It’s just anxiety. It’s just a migraine.

Every one of those sentences sounds gentle. Reassuring, even. And every one of them taught me the same lesson, which is that the thing my body was reporting was too small to matter, and that I was the kind of woman who made too much of things.

That lesson goes deep. After enough of it, you stop needing a doctor to dismiss you. You do it yourself, at home, before you ever pick up the phone. You feel something wrong, and you hear the word "just" in your own voice, and you decide not to waste anyone’s time.

That is the real injury. Not the missed diagnosis. The part where you stop trusting the only instrument that was ever actually reporting from inside your body.

What the research says about women like us

For a long time I thought this was a story about me. About being unlucky, or unclear, or too anxious in a waiting room.

It isn’t.

Autoimmune disease overwhelmingly affects women, and the road to a diagnosis is measured in years rather than weeks. Surveys by the American Autoimmune Related Diseases Association have found the average patient sees four or more physicians over roughly four and a half years before anyone gets it right, and close to half of autoimmune patients report being labelled chronic complainers or told their symptoms were psychosomatic somewhere along the way. Broader reviews put the range even wider, with the time from first symptoms to formal diagnosis for many autoimmune conditions landing between four and seven years, and often longer.

And it's not that these women are bad at describing their symptoms. Autoimmune illness tends to open with vague, overlapping complaints: deep fatigue, aching muscles, brain fog, joint pain that moves around. For women, those are precisely the symptoms most likely to be waved off as psychosomatic, with advice to manage stress or sleep more standing in for further testing.

My eye was not vague. But even there, the system was slow to see what it was looking at. Optic neuritis is the first symptom of MS for roughly one in five patients, and yet until the diagnostic criteria were revised recently, the optic nerve was not formally counted as a lesion site when diagnosing the disease at all. Research also makes clear why that delay matters, because a lag in diagnosing MS can cost you function you do not get back.

I am not sharing those numbers to make you angry, although you are allowed to be. I am sharing them because when I finally read something like this, years too late, something in my chest unclenched.

I was not imagining it. I was not exaggerating. I was one of thousands of women moving through a system that is measurably slower to believe us.

The years in the middle

I will not walk you through all of it. But you should know the shape of it.

In February 2021, I was diagnosed with Graves' disease. My thyroid numbers were high enough that my doctor was worried about a cardiac event. That one, at least, moved fast. Medication immediately, an endocrinologist immediately.

I told her on the phone that I was changing my diet and my whole lifestyle.

She told me it would not work.

She told me I would be on medication for the rest of my life, that within about a year and a half my thyroid would likely have to come out, and that I would be on thyroid medication after that, permanently.

I went for bloodwork every two weeks for nine months. Every month or so, my numbers were lower, and my dose came down again. At nine months, I was off the medication entirely. She called to tell me she did not know how that was possible. About a year after that, it was formally noted in my records that I no longer had Graves' disease.

I want to be careful here, because I care more about being honest with you than about telling a clean story. Medication was part of that nine months. It was doing work. What I will say is that I overhauled everything I ate and how I lived; my numbers came down and stayed down, and I believe with my whole chest that what I changed was a real part of what happened.

What I will not forget is being told, by someone with far more training than me, that nothing I did with my own body could possibly matter.

And here is the part that stopped me. Reversing Graves' did not make me well. My body still was not right. My emotions were erratic. I felt disconnected from myself. And every doctor was still telling me my results looked fine.

What I did not know was that I had been living with black mould in my apartment for nearly seven years.

A naturopath finally ran tests our system doesn't offer. Mould poisoning. A Lyme-related bacterial infection. Chronic inflammatory response syndrome, where the body cannot properly clear certain biotoxins and stays in a state of constant immune activation. Brain fog so thick I lost words mid-sentence. Heart palpitations. Headaches that did not stop. Pain I had no language for.

That process cost close to $20,000 out of pocket. No coverage. I want to name that number out loud, because the cost of not being believed is not only emotional. For a lot of women, it is financial, and it is enormous, and nobody warns you.

I could not have covered that alone. My family started a GoFundMe, and someone very close to me helped carry the rest. I know how rare that is, and I do not say it lightly, because plenty of women reading this have no one to pass the hat and no twenty thousand dollars to find. That is the part that makes me angriest. Getting answers should not depend on who or what you happen to have.

The day half of my body went quiet

I was studying at home when my left foot went numb.

Not tingling. I have had tingling for as long as I can remember, and I had been told for years it was normal. This was different. I was hitting my foot. Squeezing it. Nothing.

I told myself it was one foot, and I kept going.

By the end of the day, the feeling in the entire left side of my body was gone.

All of it.

My leg, my arm, my side, my backside, my vulva. Half of me had no sensation at all.

I called 811. The woman on the line told me to call an ambulance immediately because she thought I was having a stroke, and that arriving by ambulance would get me seen faster.

We waited twenty-seven minutes.

The hospital was five minutes away. Nobody came. My partner drove me.

Then we waited a long time inside. They took blood. They took urine.
The doctor came back and told me my vitamin D was low.

Not a stroke. Everything looked fine.

I said, half of my body is numb. I cannot feel anything; I don't think everything is fine.

He said it should clear up if I took enough vitamin D per day. He asked me to come back the next morning for a bit more bloodwork.

I came back. I waited hours. A different emergency physician told me exactly the same thing. Nothing they could see.

I asked for an MRI. I asked for a CT scan. Both refused because my blood pressure was fine, everything looked fine, and imaging like that is for emergencies. If I wanted it, I would need to go through my family doctor.

My family doctor said she wasn't sure why I needed those tests or what could possibly be going on.
She said she would put in a request, but she didn't know how long it might take.

That is where the trail went cold. Half of my body was numb, and the trail went cold.


The person who finally said it

A few months earlier, I had a treatment for varicose veins. So I went back to that specialist, a man who had worked as a general practitioner before, and I asked him a small technical question. Could anything you did to my leg cause numbness like this?

He examined me. Then he said a sentence no one had said to me in fifteen years.

I said, "Sorry, what?"

He sent me for everything. MRI, CT, X-ray, ultrasound. I was booked within a couple of weeks.

My vein doctor. That is who caught it. Not emergency, twice. Not my family physician. Not the three specialists who looked into my eye a decade earlier. A vein specialist I went to see about my leg.

The MRI took two and a half months. The neurologist called a week after. I sat in his office, and he showed me the lesions on my brain, and one of them lined up with an eye that had gone dark eleven years before.

What I did with the diagnosis

I took the steroids. High dose, over two days, and I was in bad enough shape that I needed something.

He also offered me an oral medication to start on. He was straightforward that he is a neurologist rather than an MS specialist, and that the MS clinic would sit down with me properly and go through the fuller range of options when I got in.

I told him I did not want to start it.

Not never. Not out of stubbornness. I wanted time. I had watched my own body respond to what I ate and how I lived during Graves', dramatically enough that my endocrinologist could not explain it, and I was not going to be put on something within nine days of a diagnosis without understanding what I was choosing.

He looked at me like I had grown a second head. He told me MS is progressive, and that I could lose function.

I told him it was a risk I was willing to take.

I need to stop here and say something directly to you, because this is the part of my story that gets quoted out of context.

I am not telling you to refuse your medication. I am not telling you what to put in your body. I made a decision for my body, with my eyes open, knowing the risk, after living through everything above. It is my decision, and I own every consequence.

Yours belongs entirely to you, and you should make it with your own research, your own care team, and your own body’s information. If someone hands you my story as a reason to stop your treatment, they have misunderstood it.

What I am telling you is that you are allowed to be an adult in that room. You are allowed to ask what the evidence is. You are allowed to ask what happens if you wait. You are allowed to say, I need a week to think.

What I do differently now

I stopped walking into appointments as a question and started walking in with a proposal.

I do the research first. I write down exactly what my body has been doing, with dates. And then I say what I need. I need bloodwork for this. I want this tested. I need a referral to this specialist. Here is why.

It did not always work. My family doctor said no to me more than once. Emergency said no. And when that happened, I went to a walk-in clinic. I waited hours. I drove across the city. I found another doctor.

Eventually, I found a family physician who will send me for what I ask for, and finding her took effort I shouldn't have had to spend.

I know what this sounds like. It sounds exhausting, and it is. It is not how any of this should work. You should be able to walk in, describe what is happening, and be met. But I would rather tell you the truth about what it took than sell you something gentler that leaves you unprepared.

What I would say to the woman in that first chair

If I could go back and sit down next to the version of me holding that migraine pamphlet, this is what I would tell her.

Your body is telling you the truth. It has been telling you the truth the entire time.

We are intuitive. Our bodies report to us constantly about what is wrong and what we need, and when something has shifted, and we are taught almost from the beginning to override that signal in favour of whoever is standing in front of us with more authority. A doctor. A parent. A partner. A friend who tells you it cannot be that bad.

If you know something is not right in your body, then something is not right in your body.

Keep going until somebody listens. Don't wait for someone to arrive, rescue you, and hand you the answer. Go looking for it. Ask for the test. Ask again. See someone else. Write it down. Keep the record.

You don’t have to do this alone

Can I ask you something?

Where are you in this right now? Are you at the very beginning, with a symptom you keep explaining away and a small voice underneath it saying something is wrong? Are you in the long middle, with a folder full of normal results and a body that clearly disagrees? Or do you have your diagnosis, the word you waited years for, and you’re finding that the word did not come with any of the answers you thought it would?

Wherever you are, I want to say something about being alone in this, because I think we get that word wrong.

You might have people. A partner who shows up. A mother who calls. A best friend who would drop everything for you. And you can still feel completely alone inside this, because the people who love you have never lived in a body that betrays them. They want to help, and they don’t have the map. So they say the things people say. Are you sure it isn’t stress? Maybe you need a break. You look fine to me. They mean it kindly, every single time, and every single time it lands like a small door closing.

That is a specific kind of lonely. Loved and unaccompanied at the same time. If that is where you are, you are not ungrateful, and you are not imagining the distance. You are carrying something the people around you have never had to carry, and you’re doing it while also reassuring them that you’re okay.

I lived in that place for fifteen years. What eventually changed it was not one more test result. It was finding people who already spoke the language, and learning how to walk into a room and be heard.

What I have for you is everything I wish someone had handed me in that first chair. Take whatever piece of it you need and leave the rest. You are not behind, and you don’t have to be ready for all of it today.

And whichever piece you take, you’d be walking it alongside someone who is still walking it. I’ve navigated a lot of this. I’m also still navigating it, still learning, still changing my mind as my body teaches me new things. I’m not standing at the finish line waving you forward. I’m a little further up the same road, turning around to say I’ve got you.

Come sit with us. The TRAC community is a place to ask questions and be around women who understand this without you having to explain it first. The membership is free. → Join us

Or work with me one-on-one. If you want someone in your corner while you sort out your next steps, you can book a time with me directly. → Book a call

And if you take nothing else from all of this, take these three things.

You are not too much. You are not imagining it. Your body has been telling you the truth all along, and you are allowed to believe it.

I’m so glad you’re here.

With you,

Jennifer