ANNA'S STORY EPISODE 2

THE FRUSTRATION OF BEING DISMISSED

The views and opinions expressed in these interviews are those of the individuals and do not necessarily reflect the views, opinions, policies, or positions of Kiniksa Pharmaceuticals.

Anna:
I was referred to the cardiology clinic. I remember going and being the youngest patient in the waiting room, which is never like a great feeling. And this wonderful angel of a human being walks in and he says like the most magical words that any chronic illness patient can hear. He's like, "So, I've been reviewing your chart for a while now." And I'm like, "This is amazing. No one ever reviews my chart."

Anna:
"So, you're here for recurrent pericarditis." And I was just like, "No. I have acute pericarditis episodes." He's like, "No....You have recurrent pericarditis.

Edy:
I’m speaking with Anna, a 36-year-old woman living with recurrent pericarditis. Anna, you waited 20 years to receive that diagnosis...the proper diagnosis.

Anna:
And a diagnosis that was so obvious to him. He thought I knew. And I was like, "No. No one's ever said that to me before."

Anna:
And he's like, "No. You have recurrent pericarditis.” He pulls up the echocardiogram. So, we're literally looking at my heart on a screen. And he's like, "You have structural changes to your heart that somebody at your age - I was thirty-one at that time. "Your heart should not look like this at thirty-one. You have scarring to your heart, because there has been so much untreated, or under-treated inflammation." And that is not great news. Like, not great news. And I didn't even care because it was the first time where I was like, "I'm not crazy. I'm not crazy." I knew something was wrong. I knew it was bigger than these one-off flares. I knew it was bigger than I'm just stressed and I'm working 80 hours a week. So, he's giving me this not great news. He's giving me this diagnosis that now I'm going to have for the rest of my life, and I just felt relief. Just relief. At that point, you know...20 years later. From eleven to thirty-one to get a diagnosis.

Edy:
What would you say, to other physicians, in terms of what they could learn from you, and about your case?

Anna:
I say this as somebody with a fantastic provider...

Anna:
He always asks if he can bring his cardio fellows in, his med students in. And one of the things that he tells them is, "I want you to look at her. I want you to see that she is petite. She is athletic. She does not look like somebody who should have, you know, a cardiology diagnosis.”

Anna:
But for me, I think it's...

Anna:
Doctors were very quick to attribute it to some sort of mental or emotional stress, and that made even the path to getting acknowledgement of these acute episodes very, very difficult. I can remember being in the ER, I was in my late twenties. I had known that I had had a flare brewing. I could feel that pressure in my chest. Hurts when I lay down, feels better when I sit up. And I was really just like trying to power through. We had these plans. I wanted to go out with my friends. And I really hit a wall that night while we were out, where it was the, "I cannot breathe. I cannot do this anymore.” We went to the hospital where I've been a patient my entire life. And even with all these like, you know, the ICD code is in my chart. You know, of all these different acute pericardial episodes. And the ER nurse, her first reaction was to ask me if I was taking recreational drugs. I was just like, “Can you see my chart? I can barely have a cocktail the way my friends can because of the drugs that I'm on?” I was just arguing for a chest x-ray at that point, because I knew what they would find. I had this happen to me a few times in the ED setting. You know, I would be seen in the ED and then I would just get referred to some random cardiologist. And a lot of times, when an acute episode resolves itself, by the time you go for follow-up there's nothing to look at. So, I would go and I would have follow-up. And I remember this resident, we got through the whole work-up, and he's like, "Nothing's wrong with you. You're fine." And I was just so frustrated. And he looked at me and he was like, "That should be a relief. You shouldn't want something to be wrong with you." And I was like, "Okay. I don't want something to be wrong with me. I want answers, and I want to understand, and I want to not be dismissed like this. Like, I'm not here for fun." And so, that became, for me, really a hallmark of my experience with these pericarditis episodes. Where, no matter what care setting I was in, I was being dismissed, and disbelieved, and patronized and...

Edy:
And unseen.

Anna:
And unseen.

Anna:
You know, it's sort of a - it's a little bit of a double-edged sword. And I say that because I'm encouraged by the fact that when patients like me find themselves in a clinical setting there are questions about anxiety, and depression, and mental health. And that we're having those conversations more than ever before. But I would caution providers from using those as the linchpin for everything, especially in women. Just believe your patients. Believe that the symptoms they are explaining to you are real, um, that they are interfering with their life in such a meaningful way. Believe that even if there is anxiety and depression present — that's not a rule-out diagnosis. I have anxiety, I have depression. Okay. That's fine. But that doesn't — that's not something that should rule out everything else as a result.

Anna:
it's so hard for providers to understand how much it took us to get to that office in the first place. And especially when you have pain that's so unrelenting that just makes the simple act of breathing so hard.

Anna:
Sort of this panic-inducing, no matter how many times you've gone through it, of like you might not ever catch your breath ever again. That this might just be it forever.

Edy: 
And when you feel, "Oh. This might just be it forever." What's that rabbit hole?

Anna:
Ooh. That rabbit hole. Truthfully, that rabbit hole is I would not be sad if I closed my eyes and never opened them again. If that was relief from this, then I'm done. I'm out. That's okay. And I say that because I, I don't think as patients in chronic pain, we talk about like the very brink that pain pushes you to. To come in and feel like you have to go through some sort of like performative exercise to get somebody to believe you is really - is really difficult.

Anna:
Nobody wants something to be wrong with them. They want to understand what is happening to their body, why it's happening, and how they can make it better. For so long I would experience providers that would, you know, ask about anxiety, and stress, and depression, and work, and are you safe at home? And of course, those are very, very important questions to ask, but they are not the only questions.

Edy:
What are some of the questions to ask that you think would be important?

Anna:
If your patient tells you that it hurts more to lay down and that pain is alleviated when they sit up and they lean forward, you shouldn't have to ask any other questions. That's not anxiety. And even if it's not pericarditis...something is wrong.