Hey guys. I come to you at a very weak moment. I am in my bed, curled in a ball, hoping my pain meds kick in soon. Though they have worked so many times before, there is always a part of me that worries “this” will be the time it doesn’t. The worry pops in everytime my pain is so high. Pain in itself is scary; no one likes to go through it. However, when pain is so intense that you can’t focus on anything else and you’re trying to hand on to sanity because it grounds you. Because if your physical body is breaking down and throwing all its best men against you, you at least need your mind to be okay and feel like a human. However, when pain is so intense, it’s hard to keep a sane mind. It’s hard to not fall into a pit of anxiety because you are terrified it won’t end and this will be it. This is how you will die. I can’t say my pain gets to that level all the time, but even the 2-3 times a month it happens is hard to deal with.
In the beginning of this medical nightmare, the pain was every day. The best way I could describe it is first it starts out as a bloating feeling, like someone is blowing a balloon in my stomach, but won’t stop, even at the point of pain. Then, it changes into a complete demonic beast that feels like a Charlie horse in my stomach, that same rolling waves of pain that people usually get in their legs during cramps. It was so scary the first time that I even went to the ER the first time I had it, but guess what? They had no answer. I had blood work and an abdominal CT scan both come back normal. They thought maybe kidney stones, so they gave me some pain meds and told me to drink a lot of water. Turns out it wasn’t that. I then went to a gastroenterologist, and he told me it was all from my weight, but I also did have gastritis. From that moment on I went on a bland diet, only chicken with no seasoning, white rice, oatmeal, and broth for weeks. The one time I tried broccoli, boom the pain was there. It two two months, and I finally felt comfortable enough to try vegetables and seasoning, very small introductions. I didn’t die. Soon my food palette opened wider, while I couldn’t eat terrible like I used to, literally living on fast food and takeout, I had more options than my four item menu.
The pain went away for all of August and I got cocky. I thought, “Hey look, my normal life is back!” I started to go on trips, not vacations I mean like to the grocery store. Everything was okay, and I thought I was getting better until 9/11. My family decided to drive to see the Tribute of Lights of the Twin Towers, a 45 minute drive from our house. About 20 minutes in, I got the pain. I was crying in my passenger seat, yet I didn’t want to spoil the night. However, the pain kept intensifying until I had to say something. I took my pills, but they take an hour to kick in and because I was away from home, I was scared. We ended up having to leave early, only to have the pills take effect on the way home.
The pain appeared a few times since then, and tonight is a night it hit. My parents are convinced I bring it on myself, so tonight they persuade me to wait and see how much pain I can withstand. It resulted in tears and hell. No one understands. Everyone thinks I’m overreacting, I have a weak pain tolerance, or I’m faking it. I wish people understood how terrible it is. I would challenge them to an hour in my body, I wouldn’t wish them a day of it, no one deserves that. I just wish they could spend time in my body and see how difficult it is to do anything.
There is the physical aspect of pain and the mental. Not only do I have to experience the pain, but I have to worry about when I will get it, where I am if I get it, who I am with, do I have my pain pills, will I cry in public, will I be able to handle it, will I have a place to lay down if I have to, will I be able to move myself to get into a car to go home, will I be able to go home? The list goes on and on.
People see me never going on, spending all my time on the couch, not looking for a job, and it’s easy for them to say I’m lazy and milking the situation, but they don’t understand how it is to be me and how much pain I get in. Even if I was able to get a job, imagine if I had the pain at work. My pills take an hour to kick in. When I get the pain, I am rendered to being in a crying ball. I can’t be at a job and do that and I can’t just leave and go home. My parents tell me I have to push through the pain, but I don’t see how it’s possible.
The worst part of this all is how I have no answer. The only reason I have pain pills is that I had to cry, pleading with my primary care doctor to give me something for the pain until I can get an answer. I have no refills, so I have to ration the medicine and ask myself I’d I really need it at times. I’m so afraid I will need it one day and not have it.
Having a diagnosis is tough, but at least you have a path on what to do. Even if the path is scary, long, and painful, there is something there. Being undiagnosed, I am stumbling through a crowded wood blindfolded with no end in sight. I have no idea what I’m doing, and no one can seem to help me. To have friends and family, not only doubt me, but also leave me in this time is so unreal. I feel like I am living a nightmare. I just graduated college. I want to be out in the world, working, finding myself, and instead I’m in bed or my house day after day. For anyone to think I am actively choosing this, my heart is broken. I feel so alone. I want people to understand, but I would never want them to have to go through what I do.