Living with a rare disease: The constant anxiety is real

Three months ago, I suffered a brutal flare-up of my underlying condition—something quite rare. It was terrifying. There was this bizarre sensory distortion involving light, and before I knew it, I was waking up in the back of an ambulance. During the episode, my heart rate spiked to 200 beats per minute; I genuinely thought my chest was going to explode. The doctors at the hospital did what they could to stabilize me, but even though my doctor claims my heart isn't technically "diseased," it certainly isn't healthy either. I’m currently waiting on a consultation with a specialist cardiologist to get some real answers. Since that attack, my life has spiraled. It started with panic attacks triggered by the exact spot where the incident happened, then moved to being in a car, then quickly escalated to being anywhere outside the house. Now, it’s even reached the point where I feel unsafe just showering or eating. But honestly? The worst part is the constant, unrelenting dread. I feel this persistent pressure in my chest and these intense palpitations all day long. I can't just tell myself, "Oh, it's nothing, it's just anxiety," because I know better. This isn't just in my head. My heart is compromised, and I am physically unwell. This fear has become so paralyzing that I barely leave my room anymore; whenever I attempt to do anything, my chest tightens so violently it feels like I'm having a full-blown heart attack. I've been reading through your experiences here, but I haven't seen anyone describe symptoms quite this overwhelming. To make matters worse, I can't even take anti-anxiety medication because it would interfere with my primary condition. So, I'm stuck waiting for an appointment with a psychologist.
I am reaching out to ask if any of you have gone through something similar, and if you have any actual, sensible advice.
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Living with this constant fear for your own health and your life—it’s honestly pretty terrifying, especially when you're dealing with these sudden attacks that just happen out of nowhere, totally out of your control, and feel like they could actually take you out. Most people don't really know how to wrap their heads around that kind of stress, so if you're feeling it, I'd seriously suggest reaching out to a psychiatrist ASAP. You've basically gotta find a way to accept the condition and figure out how to live alongside it...

Whenever you're dealing with life-threatening illnesses, there’s this massive psychological toll that takes over. It's an exhausting ordeal, and if you happen to be dealing with external stressors at the same time—you know, when everything seems to pile up against you all at once—it can feel incredibly suffocating. I suppose... well, I've lived by the motto for quite some time now: I try to expect the best, but I always make sure I'm prepared for the absolute worst. 😵

Regardless of how much grit you have or how well you think you can handle whatever is weighing on you, I would suggest getting ahead of things. Maybe schedule a checkup or some preventative screening just to be safe. Why wouldn't you? 😉 .. I certainly don't mean to sound like I'm inviting bad luck or wishing anything ill upon you; quite the opposite, really. I truly wish you nothing but the best. 👍