The Reality of Suddenly Being Diagnosed with an Invisible Illness

Beware: this post is deep and full of self-doubt. It isn’t about inspiration and motivation, it’s raw and honest. It’s about my greatest fears right now and my struggles. It was hard to write. I’ve written and re-written it at least five times and I’m still not completely satisfied.

 


This morning I woke up feeling fearful, and I’m not even sure of what.

Lately I’ve been feeling better, physically, than I have in the past three months. My resting heart rate has decreased to a healthy level, and has stayed there for the past two days. But, that’s not to say that it isn’t going to go back up. It most-likely will.

I’m in the process of signing up for my senior year of college classes. While most students find this somewhat stressful, I find it overwhelming. I had to leave school for the last half of my junior year, who’s to say that I won’t struggle through my first semester back? I’m scared that I’m not going to be able to jump back in the swing of things, at least not as quickly as I would like.

Right now I’m trying to find strength just to enjoy things that I used to, to drive, to carry a job, to focus.

I didn’t ask for this.

I was on the dean’s list at school, working in the Student Life office on campus, a Community Advisor in the residence halls, and an overachiever with a full schedule.

I got coffee with my friends on the weekends, planned to go hiking in the summer in the mountains, and dreamed about the adrenaline rushes I’d get exploring new places.

Fast-forward three months, and I can barely leave my bed some days.

I have Inappropriate Sinus Tachycardia, a condition that won’t kill me but will make me feel “uncomfortable and “distressed (as the doctor explained it) throughout the majority of my day (Click here to read more about my diagnosis).

The reality of being diagnosed with an invisible illness, is everything seems to happen suddenly.

Suddenly I can’t do the things I used to. Multitasking on projects suddenly stresses me out. Walking around feels like running; I exhaust myself just taking a shower or brushing my teeth. When I talk fast and excited, my heart begins to race and suddenly I can’t breathe. So I have to pause doing things where I never had to pause before.

I was a lover of public speaking. A few days before my first trip to the hospital with tachycardia, I gave a presentation. I remember feeling out of breath, overly anxious, almost light-headed. I don’t get like that. I love talking in front of large audiences, it’s like a tiny adrenaline rush with every presentation and speech. My body can’t handle those little adrenaline rushes anymore, not right now.

I keep thinking to myself:

What happens when I have to do a presentation and I can’t stand or speak for long periods of time? What happens when I get stressed about a test and faint?

I didn’t ask for this. I didn’t know this was going to happen.

I’m trying to take every day step by step. But, some days it’s just so increasingly difficult to balance life and living with having this illness.

The reality of being diagnosed with an invisible illness, is that a lot of people aren’t going to take it seriously and sometimes you’re going to doubt yourself.

Since being diagnosed with IST, it’s been suggested that I’m lazy, spoiled, mentally unstable, incapable of handling stress, etc. The people who say these things range from friends, family, and at one point… even my significant other. While they aren’t wrong in all aspects, stress is hard for me to handle right now, these things aren’t the cause of my problems. It still blows my mind that after being put through medical testing spanning over a three-month time period, being diagnosed with a heart condition by a medical specialist, and sharing my story through social media and Living with Spunk, some people have the audacity to suggest that my illness isn’t real. It’s very real. I have to deal with the very real consequences of living with it every day.

Everyone seems to “know” what you need except for you. All of a sudden your friends and family are trying to be your doctors, advisors, and support system.

After hearing these things, you sort of begin to doubt yourself as well.

I doubt my ability to do a lot of things now, things that I loved doing before.

The reality of being diagnosed with an invisible illness is, some days are worse than others.

You find yourself starting to distrust the good days, because you already know that another bad one is around the corner. Which, honestly sucks.

I’m not saying that I don’t enjoy the good days, because I try to make the most of them. But it’s also hard to recognize that the way I feel on a good day, isn’t going to last forever.

It’s hard not to be hopeful that it’ll lead you back into good health. I’m an optimist.

But, unfortunately so far, that hasn’t been the case. Not for me.

I still have bad days.

They’re getting easier to deal with, so it seems, but they haven’t magically disappeared like I wish they would.

The reality of being diagnosed with an invisible illness is, you’re going to face anxiety about your situation.

I’ve always been an anxious person. It runs in my family, and we all have varying degrees of it. But I’ve always been able to understand and control how it affects me. It seems like all of a sudden, since about a week before the episode of tachycardia that first landed me in the hospital, I just can’t control it like I used to.

I still follow some of the same rules that I have in the past when it comes to dealing with anxiety, like avoiding caffeine, sticking to herbal teas, using essential oils, doing yoga when I can, and challenging maladaptive thoughts, but it doesn’t really cut it anymore. These things still help, don’t get me wrong. But certainly not the degree that they used to.

Having a hypersensitive heart means that the slightest bit of anxiety can cause a panic. Oddly enough, sometimes if I get too excited about something, it sets off a panic attack. It’s like my body can’t handle it.

For example, a few weeks ago I was in the process of trying to catch a stray cat to give it a new home. Well the night that we finally got the cat I was over-the-moon excited, so excited in fact that I experienced an adrenaline rush that led to shaking, crying, and ultimately a really bad panic attack.

It’s unfair.

I keep finding myself in situations where I’m having a full-blown panic attack for what feels like no reason.

But the more it happens, the easier the attacks are to get through (kind of like everything).

The reality of being diagnosed with an invisible illness is, you may not know if you’ll ever feel the way you used to.

I don’t necessarily know that any of my symptoms are going to go away. They could, for sure. But when? Why? How? A big problem with IST is that no one really knows what causes it, how long it will last, or exactly why it ranges in severity from person to person.

They know that some people have triggers, but it still varies from person to person.

For instance, if I eat after about 8:15pm I typically experience worse symptoms first thing in the morning. If I don’t sleep well, I experience worse symptoms the whole day.

I keep wondering:

Is this affecting my quality of life, and to what degree?

It’s a lot of trying to find acceptance in this new and unfamiliar you. Which has been particularly hard for me.

Don’t get me wrong, I’m fine.

I’m obviously not in the best shape of my life. I’ve had good days and bad days, great days and terrible days, but I’m making it.

I don’t want you guys to read this and think that everything is terrible, that I hate my life, or that I’m unhappy.

Because, I’m not. The good days make up for the bad ones, even the really bad ones. The people in my life make up for a lot, and the memories that we make together mean everything to me right now.

But I do want you guys to read this and realize that invisible illnesses are just as real as others. If you’re a sufferer of one, read this and know you aren’t alone. If you don’t have an invisible illness, just read it and try to understand what it’s like to have one. Invisible illnesses seem impossible to understand, until you’re diagnosed with one… and I hope you never are.

Everything happens for a reason.

Even if we can’t understand the reasoning.

Remember that, and hold onto it.
That’s what really gets me through the bad days.

Thanks for reading.

Xoxo,