The Week After They Tell You

NEWLY DIAGNOSED  ·  11 MIN READ

It was the twenty-third of August, a Wednesday, and it was a nice day.

I was in my old apartment, sitting on the couch. The phone rang, and the screen said Alberta Health, and something in the pit of my stomach told me two things at once: that it was my neurologist, and that this was going to be a heavy call.

I answered. He said hello, gave me his name, and asked if I had a minute.

I said yes.

Within about thirty seconds, he told me he had gone over my results and that I have multiple sclerosis.

I was looking out the patio door. There was a tree out there. I remember the tree.

He explained it again, calmly. Based on where the lesions were and how they lined up, the results confirmed it.

And then I asked him the question I did not know I was going to ask. I asked whether he could tell how long I had had it.

He said that based on where one of the lesions sat, on my brain and at the back of my eye, he could confirm that when I lost the vision in my right eye, that had been my first known symptom.

That was eleven years earlier.

He said he knew it was a lot to take in. He gave me a time to meet the following week so we could go over everything properly. And then we hung up.

And I sat there.

The twenty-five minutes
I did not move for something like twenty-five or thirty minutes. I stayed in that exact spot on the couch, looking at that tree, my dog Gracie curled up beside me.

I was not crying. I was not thinking of anything I could name afterward. I was completely numb.

I think it was that multiple sclerosis had always been, in my mind, a big deal. A bad thing. Something that happened to other people, in a category of its own. And now it was mine, and my brain simply could not make the two facts touch each other.

If you have had a call like that and you did not react the way you expected to, I want you to know that the numbness is not coldness and it is not denial. It is your nervous system putting a hand up and saying, not yet. Give me a minute.

The first thing I did was Google how to cure it
Then I got up, opened my laptop, and typed in how to cure multiple sclerosis.

I want to be honest about that because it is what most of us do, and it usually gets described as a mistake.

Everything under the sun came back. I sat there for about two hours reading, and it was only after those two hours that I called a single person in my family.

Two hours of research before I told anyone I loved.

I do not think that was wrong, exactly. I think I was doing the only thing I know how to do when I am frightened, which is go looking for information. But I notice now that I put a task between myself and the feeling, and I did that for a long time afterward too.

Calling my dad
When I finally called, it was my dad.

He picked up and I said, "Dad."

And then I could not speak. I just cried. He was scared, asking if everything was okay, and I could not get a single word out.

The only sentence I managed, in the middle of all of it, was this: don’t panic. I’m safe.

Then I cried some more, and eventually I told him, and it was a heavy conversation. After that I told my partner and my mom.

But I have thought about those four words a lot since.

Don’t panic. I’m safe.

I could not say the words multiple sclerosis out loud yet. I could not say I am frightened. The first full sentence I was able to form, sobbing, in the worst minute of my life, was a sentence designed to make somebody else feel better.

That is not about him. It is about what I am built to do, and I suspect you are built the same way, because most of us are. We deliver our own bad news like a hostess. We watch people’s faces while we tell them. We say I’m okay before anyone has asked, and we mean it as a kindness, and it costs us something every time.

The week I floated through

He gave me an appointment for the following Friday. In my head it has always been a week. It was actually nine days, and I have almost no continuous memory of any of them.

I floated through it.

What I do remember is that every single day I listened to a podcast about MS, and I researched constantly. Medications. What could happen. Whether it could be reversed. What life looks like. Anything and everything.

And what I found was every possible version of the future, all at once.

People living medication free and thriving. People saying that going medication free will eventually put you in a wheelchair regardless. Worst cases. Best cases. Bad, worse, terrible, and then somebody saying you can still have a happy healthy life.

All of it, in the same evening, on the same screen.

That is the part nobody warns you about. It is not that you find bad news. It is that you find everything, and there is no way, in week one, with no experience and no context and a brain full of adrenaline, to sort out which of it applies to you.

The Wednesday I told Renée

I had barely told anyone. But a week in, on the thirtieth, I told my yoga instructor. Her name is Renée, and I told her because I adored her and because I felt safe around her, and that turned out to be the most important thing I did that month.

I cried in the yoga studio afterwards.

And then Renée told me two things.

The first was about a family member of hers who had been living with MS for over ten years. Medication-free. Choosing her own path. On her most recent imaging, some of her lesions were no longer there.

The second was about a doctor named Terry Wahls, who has progressive MS, who ended up in a wheelchair, and who built a nutritional protocol and got a great deal of her function back. Renée said she would bring me the book.

I want to be careful here, because one person’s outcome is not a promise and I would never hand you one. But I had spent seven days reading every possible version of my future on a screen, and not one of them had a name or a face. These two did.

Nothing changed that afternoon. No decision got made. But a seed went in, and I carried it into that office two days later.

And I was not kind to be around

There is a thing I have not seen written down anywhere, so I will write it.

I was irritable that week. Short with my partner. Snapping at nothing. Not obviously angry, more like every ordinary thing in the world had become slightly unbearable and I could not say why.

And I did not connect it to anything. I thought I had simply become a worse person.

Here is what I know now. Mood changes are a documented part of MS itself, not a personal failing. MS Canada lists mood changes including grief, depression and anxiety among the less visible symptoms of the disease, alongside difficulty with memory and concentration. Being happy one minute and angry the next, or brought to tears by something small, is described as a common experience, and stress and grief feed into it as well.

And this is not only MS. I had exactly the same thing with Graves’ disease, long before anyone said the word autoimmune to me. The irritability, the crying at nothing, the fuse that had gone from long to nonexistent. It is threaded through so many of these conditions, and almost nobody warns you about it.

So think about how long you have been apologizing for your own temper. Think about the times you have said sorry, I do not know what is wrong with me. The conversations you handled badly, the person you snapped at over something small, the running quiet suspicion that you have become someone unpleasant and cannot seem to stop.

That distinction is not a technicality. It is the difference between fifteen years of low-grade shame and fifteen years of information about your own body.

I have a lot more to say about this, about what irritability and fatigue and mental exhaustion do to our relationships and to how we see ourselves, and I am writing about it properly in its own post.

LINK → Irritability, exhaustion, and the person chronic illness turns you into.

The appointment where I could not stop crying

Nine days later, I sat in his office, and he showed me the scan. The lesions on my brain, on a screen, in a small room.

And I cried from the moment I saw it until the moment I left.

I was completely present. I heard everything he said, and I remember all of it now. But I could not control my face, and I kept apologizing. I must have said it four or five times. I’m sorry. I don’t know why I can’t stop crying.

I want to reach back and tell her something.

You do not have to apologize for crying in a room where a stranger has just shown you a picture of holes in your brain. That is not weakness and it is not a lack of composure. It is the correct response.

I have thought about where that apology was going. Not to him, really. It was going out ahead of me, the way it always did, clearing a path so that nobody in the room would find me inconvenient.

Where the grief actually went

For a while, I did not let myself feel it. I dove into research instead, which is my way of not being still.

The grief came in waves, and it is honestly still coming.

For a few days after that appointment, I felt burnt out and sorry for myself, and I am going to say the ugly quiet part because I think it needs saying.

I had already been through Graves’ disease. Chronic inflammatory response syndrome. Mold poisoning. Concussions. Years of pain and dismissal and paying my own money to find out what was wrong with me.

And my thought, sitting with the MS diagnosis, was: really? This too?

I had always known something was wrong with my health. But MS felt like a big bad beast in a way the others had not. It felt like being told that I was not only sick, I was sicker than I had understood, and for longer.

I want to be careful saying that, because I know there are far heavier diagnoses than mine and I am not claiming the worst of anything. But it was the heaviest one I had been handed, and in that moment it was hard, and pretending otherwise would not help anyone.

And here is the thing about the grief that I did not expect. It does not arrive once and leave. It comes back on ordinary days, when you reach for something your body used to do easily, or a sensation is different from how it used to be, and you remember again that this body is not the one you knew.

Nobody holds a funeral for this. There is no casserole, no card, no afternoon where people gather and say kind things about what you could do before. You are expected to be grateful it is not worse, and mostly you are, and the grief goes on happening anyway, privately, in the middle of an ordinary Tuesday.

What came after

Renée brought me the book once I was back from that weekend, and told me to keep it. It is still on my shelf. The Wahls Protocol was the one. After it I read Healing Multiple Sclerosis and started listening to the Overcoming MS podcast.

Later that month, I met her family member in person.

I remember where we met. I remember sitting there. I remember crying. I remember feeling seen and heard for the first time since the phone rang.

And it was several months before the MS clinic called me in. My dad was frustrated by how long it took. By the time I finally sat down in that room and said I was not starting medication, I was not saying it on a feeling.

I had met a woman in the flesh who was doing it. I had a physician’s account of her own body on my shelf at home.

That is the whole reason this exists. I am not the woman with the vanished lesions, and I am not finished. But if I can be for one woman what Renée was for me that Wednesday, that is enough. That is the entire point.

The people I did not tell

There were a lot of them, for a long time.

I told the people I needed to tell, and then I stopped. Not out of shame exactly. More that I did not have the energy to manage other people’s reactions on top of my own.

Later, when I was ready, I let people know. And something unexpected came out of it.

Telling people gave me permission to set harder boundaries. To be honest, living with a chronic illness changes how you show up sometimes. To limit how much of myself I hand out.

I am very good at giving myself away. My energy, my time, pouring into other people. And when you live with a chronic illness, especially depending where you are on that road, you need as much of your own energy and space and time as you can possibly hold on to. There is often not much left to give away.

So you get to decide who knows, and when. It is your information. There is no timeline you owe anybody.

On what I believe, said carefully

I want to say something about mindset, and I want to say it carefully, because this is where a lot of chronic illness writing goes badly wrong.

When I was reading everything that week, I saw one person in a wheelchair and one person running marathons, and both had my diagnosis.

What I personally believe is that we create a lot of our own reality. That the choices we make can steer us one direction or another. That belief is a large part of how I have lived since, and it has served me.

But I am not going to push that on you, and here is why.

Not everyone has that luxury. Not everyone has the same body, the same disease course, the same money, the same support, the same starting point. Plenty of people do everything right and get worse anyway, and they did not fail. I refuse to be another voice implying that a woman’s illness is her own fault for not thinking correctly about it.

So take that one as mine rather than as instruction.

What I will say instead is this. At two in the morning, you will read about a woman in a wheelchair within five years and a woman running marathons, and you will try to work out which one you are, and you will not be able to, because neither of them is you.

If you were diagnosed this week

Here is what I would tell you, and it is less than you think.

Sit with yourself. As much as you can stand to. Not researching, not planning, not fixing. Being still. I want to be honest about this one because I did not do it well. Sitting with myself is where I have always found my answers, for years, long before any of this. And in that week it became the one thing I could not make myself do, because being still with it felt unbearable, so I went into research mode instead. If I could go back I would sit with myself longer and search less. The answers were never on the twelfth tab.

You do not have to decide anything yet. Not this week, and not next week either. There will be real choices ahead about treatment and about how you live, and almost none of them have to be made right now. Slow down. Get more than one perspective. Talk to more than one doctor. And know that whatever you decide is not carved into anything, because you are allowed to choose one thing now and something entirely different in six months when you know more and feel different. Changing your mind later is not failure. It is what listening actually looks like over time.

Take it day by day, and expect the days to differ wildly. There were mornings I did not know how I would get out of bed, and I do mean weeks of them. And then there were days when I woke up and thought, do I have my body back? Both are part of this. Neither is the permanent state.

Listen to yourself. Your heart, your gut, your body. You know yourself better than anyone or anything else, including the internet, including this page.

And if you feel alone, look further out. You can always find your people. They exist, and there are more of them than you would guess, and they are already having the conversation you need to be in.

There is always a path forward. Sometimes it is rough and steep and it takes far longer than it should. But there is always something on the other side of this week.

You don’t have to do this week alone

If you are in it right now, in the middle of the floating and the tabs and the not sleeping, I want you to know something.

I write this because I couldn't find it when I needed it. I found the medical pages and the worst-case forums, and nothing at all that sounded like a person who had sat where I was sitting.

So here is what I have, at whatever depth you want it, and there is no rush on any of it.

Come sit with us. The TRAC community is full of women who have had the phone call. You will not have to explain yourself from the beginning. The membership is free. → Join us

Or work with me one-on-one. If you have an appointment coming and you want someone in your corner while you work out your next steps, we can do that together. → Book a call

You are still you.

The diagnosis is information about your body, not a verdict on your life.

And you are not alone in this, even at two in the morning with twenty-three tabs open.

With you,

Jennifer