When I Try to Explain What Undiagnosed Chronic Pain Feels Like


I’m not sick, but I’m not well.

The most frustrating part of this for me is knowing exactly how I feel and not being able to fully convey those feelings to someone else. Telling someone you are in pain, no matter who is listening, will never make them understand. Yet, not trying to explain your pain will always do more harm than good.

I’ve tried hundreds of times to put it into words for anyone who would listen — to attempt to describe it in such a way that they may understand it, in hopes of knowing how to tame it. Every comparison I can think of does little justice to it — merely a glimpse into a much larger, interconnected, unexplainable web. For whatever reason, writing it down helps. Like one day the pieces will connect and the map will point towards a single answer.

So here it goes…

I can’t remember when the pain started but I know there was a time when it was the only thing I could think about. Pain controlled my every move. I don’t even know how to put it into words. It’s the worst cramps I’ve ever had for hours at a time. It hurts so much I could vomit. It’s like getting punched in the kidneys, over and over again for eight rounds straight, with no one in my corner. It’s shooting pain, radiating from my hip down to my toes. It’s like I’m being electrocuted by a million volts.

Stabbing. Tingling. Throbbing. Numbing. Pain. Sometimes it happens one by one, sometimes its all at once. Sometimes it’s for a few hours, sometimes it’s for days. On my best days, its a nagging pain, like an old injury constantly playing in the background. On my worst days, it controls me. Paralyzes my every move, stops my life in its tracks.

Just ignore it. Pretend it’s not there. For months, I refused to acknowledge my pain. I had spent years of my life in doctor’s offices already. Random colds mixed with broken bones, scattered between heart palpitations, bloody urine and MRIs. Nothing was ever actually wrong. Just a series of could be’s but probably nots. I was done with doctors, done with tests, done hearing it must be in my head — so I decided nothing was wrong.

But I was wrong. Something was wrong — is wrong. Just when I start thinking I’ve won, it sucker punches me after the bell. It becomes all I can think about. When pain floods every inch of my body, my mind starts to drown in it as well. My only thoughts in the moment revolve around making it stop. It trains my post-pain brain to search for warning signs, to spend hours consumed by giving it a name. Without a name, there is no counterattack, no escape route planned. The anxiety continues to build and build, waiting for the next time it will strike. I searched for patterns, for connections, for anyone or anything that had more answers than my Google search had found.

I finally gave in to my standoff with doctors. If I saw one, I saw a thousand. Urologist, neurologist, endocrinologist, nephrologist, oncologist. Suspected nerve damage, suspected kidney and bladder disease, suspected diabetes, suspected clotting disorder, suspected vitamin deficiency, suspected endometriosis, suspected cancer. Results: inconclusive.

When doctors can’t find the problem, they treat the symptoms — which in my case, was pain. I stopped giving a sh*t about what was causing it to focus on forgetting it. Four ibuprofen turned to eight, turned to whatever generic prescription painkiller they would prescribe. It always came back, usually with vengeance, so I came back harder. The back-and-forth battle made me wish I felt nothing. It took complete control of my body. If I wasn’t in my bed, I was counting the seconds until I could cut myself off from the world again. I was four days away from exploratory laparoscopic surgery when I jerked myself back to reality.

I wanted so badly to be cut open and examined from the inside out. I wanted an answer of any kind, but something stopped me from going through with it and I still can’t explain exactly why. I decided to take control; I dove head first into healing my own body. Convinced by my hours of inspirational Pinterest quotes and conspiracy theory food industry documentaries on Netflix, I fully believed I was the master of my fate; the captain of my pain-filled soul. I became a food Nazi. Whole, raw, organic, everything. Juice cleanse, coffee enemas, and every supplement under the sun. You name it, I swore by it. For the first time in a long time, I felt a sense of control. I started to believe I didn’t need an answer or a name, I had found my own cure.

Of course, as with all things, the magic wore off and I needed to find more. I had the smallest taste of life without pain and wanted to drown in it. Still sure it was within my own power, I threw myself at fitness. The more pain I was in, the more I needed an escape. First running, then spin class, then swimming, then bootcamp. Short bursts of relief left me needing more. Crossfit became the perfect fix, a welcomed release. The few minutes after working out were the closest thing to the mid-tattoo calm or post-sex delirium. It became clear that inflicting more pain and stress on by body distracted my brain just enough to feel free. The rush of endorphins that floods the brain leaves me craving more every single time. That feeling of disconnect from the world paired with the complete connection to my heart’s beating in time with my breathing is unlike anything I can describe. Trading one addiction for another, around the same circle again. Constantly seeking more.

When I believe I am in control, I put all the eggs in my own basket. So when the pain sneaks back in, and I find my feet covered in yolk and shattered eggshells, I only have myself to blame. I found myself saying, “If I just ate a little cleaner or pushed a little harder” I wouldn’t feel this much pain. I’m still knee-deep in the mindset and struggling every day to make it to a solid middle ground. If I truly had all the control, Lord knows all of my eggs would still be in my basket unscathed.

I am working on accepting the hand I was dealt. My pain, I’m sure, is unlike any other. No one has been through it or understands its twisted dark corners like I do.

For me, there will always be days with pain. 

Days I will ignore it, numb it, fixate, and control it. Days I will override it and maybe even accept it. No matter its cause or name, there will always be days with pain. But I am certainly not the exception to the rule. Every person in my life has something they wish they could find words to explain. Their pain may not come in the form I am used to battling, but it wages war on their minds just the same.

So now when I tell my story, I don’t leave out the pain. I write it over again. I do my best to tell it raw and unedited. Let those who care enough listen, so I might come a little closer to being fully heard.

The Mighty is asking the following: Describe your experience of not quite fitting under one specific diagnosis or a label your community identifies with. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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