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Emily Suess talks about brain cancer, misdiagnosis, and finding community outside of neat diagnostic categories.

Transcript

Brianne: I’m Brianne Benness. And this is No End in Sight. A podcast about life with chronic illness.

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Drew: Hey, welcome to No End in Sight. This is your associate producer, Drew Maar. Before we get started, we wanted to remind you that no end in sight has a new newsletter. It’s full of updates about Twitter conversations happening in our hashtag #NEISVoid, book and article recommendations about chronic illness and disability, and links to new podcast episodes and miscellaneous other media. If you are comfortably able to support our work, there are paid options available, but all core content will be free. You can take a look at previous newsletters and subscribe over at noendinsight.substack.com. Today, we’ll be hearing from Emily Seuss about brain cancer, misdiagnosis and finding community outside of neat diagnostic categories. One content note for this episode: Emily and Brianne start talking about COVID and lockdown at around minute 50, and that line of conversation continues for about 10 minutes. Before we start here’s our disclaimer, this podcast is not intended as a substitute for professional medical advice, diagnosis, or treatment. Make sure you talk to your practitioner about any questions or symptoms.

[guitar riff]

Brianne: Okay, perfect. So then I like to start just by asking people, how was your health as a kid?

Emily: Yeah. So I feel like as a kid, I was pretty healthy and normal. Looking back… I, was reading your… The transcript for your first episode, and that whole retrospect.

Brianne: Yeah everything looks
different.

Emily: When I look back at everything I think, “Oh, well that could have been a thing.” But as far as doctors and my parents and I was concerned, I felt like I was a pretty healthy kid.

Brianne: Yeah.
And that… of course, for lots of people, because people get sick in all kinds of ways, makes complete sense. So for you, was there a single moment when things started to change or did they change kind of gradually at
first?

Emily: It was… yeah, there’s a defining moment for me around 2014 when I… we have this brutally cold and snowy winter here, and I was just tweeting about this actually. And I fell and slipped on the ice and hit my head. I was unconscious for a couple of minutes or seconds out there. It wasn’t long.

Brianne: Yeah. Lost consciousness.

Emily: Yeah.
And so I always attributed that to just… it was cold and snowy, but I have a brain tumor. It affects my balance. Now that I look back at that, even, I question, “Well, would I have lost my balance totally, if this hadn’t been inside my head?”
So I don’t know, but after that point, to get back to your question, after that point, I felt like things just weren’t right with me at any point after that.

Brianne: And were you
thinking of it as a concussion at that time? A TBI or some kind of a head injury, or were you even thinking about it in that way at all?

Emily: I… at that point, no, I wasn’t because after the fall… it was a couple of days later, I went into the doctor cause I still was feeling kind of weird, and I thought, “Well, I better get it checked out.” So I had a CT scan, and there was no swelling or whatever. So… yeah, I’m sure I was concussed, but there was nothing that was alarming to anybody at that point. And then for several months after that, it was just… the fatigue hit me. I had never known fatigue before, prior to getting… What I call “sick”…. prior to that, I used to run 5Ks, and not because I enjoyed exercise, but I kind of enjoyed punishing myself.
you know, liked seeing what I could do and what I could… what limits I could stretch and whatever.
So I was in relatively decent shape before that, so when I started feeling this, and I was like 34 at the time. When I started feeling this decline, the first thing that entered my mind was, “Well, you’re just not being active enough.” And so I kept pushing, and I kept pushing. And it kept getting worse.
So that was the clue to me of just, “Know your own body and understand what’s happening.” That was a clue to me that something was really wrong.

Brianne: And at that point it was mostly fatigue… were you… I know it’s so hard cause obviously in retrospect, again, you have different vocabulary, but were you thinking of it as like, “I’m really tired, I’m sick. Something’s going on if exercise isn’t helping, cause it’s always helped before.” Were you in that space?

Emily: I was in a space where I was blaming myself a lot because, we lived… we were in a tiny apartment at that time. We had just moved to where I live now, but at the time we were in this transition. I had started a new job, and I thought, “I’m stressing out. I’m not taking care of myself. I’m not…” I put it all on myself.
Everything that was going wrong, I felt like I was doing something to make it happen to me.

Brianne: Yeah, it was all a self-care deficit and nothing else. Yeah. Okay. So that was… you said in… this is four to six years ago? How does math work?

Emily: Yeah. About six years ago. So 2014, it was about six years ago. It was October. Actually… back up there’s probably going to be a lot of me doing that while we talk, but in the months between… let’s say the summer of 2014, up to October, I had gone to a couple of doctors visits, you know, just primary care.
Like, “I’m so tired. I don’t know what’s wrong.” There was a point where I was like, “Okay, I’m not doing this to myself.
What’s
going on?” Yeah.
So I had the fatigue and then that’s about the time that widespread pain hit me, like everywhere. Shoulders, neck. I mean, there was not a point on my body that you could touch that
it didn’t… like, ouch, painful, hurt, you know, not just discomfort, but it hurt. And so I went to talk about that. Pain… I mean, I know a lot of people that listen to this… pain is not received well as a symptom
by doctors. So that was… that was kind of thrown out the window, you know? I don’t blame that doctor specifically for that, but it was just… and I was part of the dismissal myself too because I just… people don’t hurt that long,
right? Pain is an acute symptom…
we’re taught this from childhood… that will go away if you just give it time. Well, it never did. And she didn’t really have anything to offer me. My blood pressure was doing weird things, but not consistently. I would go in one time, and it would be like, “Well, that’s kind of high.
Do you usually run high?” And up until that point, no, I’d always been a little bit low. My blood pressure had been really good. So then I started like, “Well, I’m in pain, of course my blood pressure is up.”

Brianne: Yeah, maybe it’s the same situation.

Emily: And there was just so many things. Eventually I went to a nurse practitioner because I couldn’t get into my primary care physician. And she’s like, “Oh, well, you’re 30. I have all these clients with fibromyalgia and you know, we’re going to run some tests. We can rule out some other stuff.” And they did a handful of things. My blood work didn’t show anything.
And then I got referred to a rheumatologist who was like, “Oh yeah, you’re 30, you’re overweight.
And you’ve absolutely got fibro.” You know what I mean? “The blood work doesn’t show anything. So that’s what you have.”

Brianne: And that’s a real classic… fibro is diagnosed too early by so many people.

Emily: Yeah.
It was… and I didn’t know any better at the time, but that doctor was a horrible doctor. He was one that I ended up contacting the board about how bad he was, and he no longer practices in this city. I was not the first person to complain about him. Anyway, he… I had other symptoms where he
would even say, “Well, you’ve got some kind of weird autoimmune thing going on that I don’t really understand.” He would admit that, but he would not look any further at anything.
So it was three years of me just off and on going back to different doctors… maybe for a week, I’d be like, “Okay, I have fibro. I need to accept this.” And then something weird would happen, and I’d be like, “No, this is not fibro.”

Brianne: And were you, I mean, I know that there were not that many treatments available, but were you trying a medication or had you… that was a “Yes.”
Were there interventions
at that time?

Emily: He immediately put me on Cymbalta or duloxetine, which is the antidepressant. It didn’t really do anything for me. It made me feel really weird. And then finally, I just decided, “This is not helping. There’s no reason to keep filling this prescription.” So I stopped, meanwhile looking for another doctor to help me figure out what was wrong. But that… I mean, they did at least try something, but it didn’t work.

Brianne: No. And just… as my own, what’s so frustrating about i