A man holds his stomach as he walks down a dark hallway, a shadow behind him looks like many tiny bugs and giant bug legs

The Scariest Thing About Having IBS

Last updated: October 2022

So, what’s the scariest thing about having a chronic invisible illness, such as IBS? Well, allow me to try to paint a scene with words.

One very late night, I got a sense of very unsettling feeling while I was sleeping. A sensation was so strange that it felt like someone was hovering over on my side of the bed staring at me with a psychotic gaze in the dark night. I suddenly woke up and anxiously turned on my night lamp to scope my bedroom with my half-woken eyes. Nothing and no one was in sight. Then, I quickly turned around to see if my wife was still sleeping beside me. She was laying there in a deep slumber, unbothered by my movements and the brightness of the light. I began thinking to myself, "I still feel like someone, or something else is in the bedroom with us. Almost as if they are invisible but quietly watching me... I must be paranoid." I questioned whether the chilling feeling that woke me up was real or just a dream, and then I decided to turn the night lamp back off and go back to sleep.

Intense, scary IBS pain

Moments later, I was awakened again, but this time by an intense physical discomfort that is hard to describe in words and easier to understand if experienced. But I will try to articulate as best as I can anyway. It felt like tens of trillions of microscopic insects were crawling underneath my skin, breaking through each vein and artery with their tiny sharp teeth and pointy jointed legs just trying to make their way into the pit of my stomach.

As you can imagine, it’s hard to go back to sleep after that. It almost feels like paresthesia succumbing to my body, but without the numbness. "Paresthesia" is the technical term for when your leg or arm "falls asleep" and is often described as pins and needles. As the feeling of those tiny insects got closer to the inside of my gut, their spiky legs became heavier and sharper. Then suddenly, I felt an instant jolt of the strongest pain that makes me jump out of bed. It was almost as if a sharp scalpel was speed racing through my intestines. I rushed to the bathroom.

Scared and alone in my IBS pain

At this moment, I was extremely scared. What just happened? Fearful that something very bad could be happening inside of me. I'm both physically and mentally exhausted. Do you know what it's like to be in so much pain that you can hardly walk, and the only person there to help carry you is you? Can you imagine carrying yourself up when you literally don’t have the strength or willpower to do so? Do you realize how scary it is to be in so much pain and have no choice but to deal with it alone?

This is what it can be like many days and nights living with irritable bowel syndrome. The pain can be so intense, and the experience can feel so lonely, as if no one else in the world can understand completely what I’m going through but me. I can yell, I can cry, I can scream, I could be suffocating, and no one would be there to hear me because it’s just me all alone in this small cold bathroom. It’s like feeling lonely, hopeless, and helpless all at the same time. I hate to sound dramatic, but I had moments I felt like I was going to die due to the symptoms I was feeling. I’m not exaggerating. I’ve been in that much physical pain before, questioning if this was it.

So, what’s the scariest thing about having a chronic invisible illness, such as IBS or even depression? You know, a part of me wants to say the scariest thing is that no one will ever know or understand the pain and the struggles someone faces daily that led them to jump off the deep end. I truly fear that for a lot of people. But, for me, it’s that sense of deep loneliness. That no one will ever understand the pain, I face. That there’s nothing anyone can even do for me anyway. And I’m all alone, blinded, and debilitated by intense pain. In other words, I’m weaponless while facing demons I can’t even see. That, for me is the scariest thing about my reality sometimes

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