The Plague of Being Undiagnosed

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.

I’m in a Bad Place

This is raw. I really laid it all on the table. I promised you honesty, and here it is. It’s not sugarcoated or funny. It’s real life hitting me so hard that I can barely breathe. Pushing the “Publish” button will be the hardest thing I will do today, but my story needs to be told. I can’t keep this poison contained in me anymore.

Hello. I’m sorry I haven’t posted in a while, I’ve been in a very bad head space. I’ve spent a few nights crying myself to sleep, I’ve spent a few car rides bawling my eyes out, and I’ve spent a lot of time just self-loathing and doubting myself. Why may you ask do I feel this way? Basically, I feel like a huge nothing. Since I got sick, my life’s been falling apart. You see, people are nice when you first get sick, and I assume they can even stick it out for more than 4 months (since being sick has halted my life), if you have a definitive answer to what is wrong. However, when you’re a college graduate with loans to pay, sitting jobless on your parents couch with undiagnosed reasons for pain and every doctor tells you the only thing wrong is that you have to lose weight, friends, family, even parents, no one understands.

I’ve had people leave me high and dry, not care for even a check in. I’ve had people judge me about the choices I’m making on a daily basis. I’ve had people tell me to suck it up and work through the pain. And today, I was informed that my parents are cutting off my cellphone. I get it. I contribute nothing to the household, I’m not entitled to have a cellphone. I can rationally think these things. However, it kind of just broke me.

Don’t my parents understand that I hate being here day after day, seeming like a lowlife moocher? Don’t they get how depressing it is to never leave the house because I’m so worried I’ll get my pain and not be able to cry in public, or God forbid, if I make a scene, how embarrassing that will be? Don’t they think I want to get better? Doesn’t anyone understand that I want to get better and continue to get pushed down further and further with every critical comment?

And now that we’re on the topic, or at least we were in my head (the screwed up, dark place that it is), when the doctors tell me it’s “it’s just my weight,” I have two issues. One, I’ve been this weight a long time. I get it it’s unhealthy. I’m not dumb. I know I need to make changes and I have since this all started. What I don’t get is how this problem can just spring up, and yet nothing can be told to explain it to me. My weight has been the same, while it’s unhealthy, it hasn’t changed. Two, I get in crazy pain at times where I can’t move and I just cry. Losing weight takes time and effort. Isn’t there anything that can be done to help me in the mean time? I’m not pompous enough to say, “Screw you, I like being fat. I’m not changing. Burger King is my life, and no one can take it away from me.” I get I have to lose the weight, but I’m trapped.

I’m trapped in a body that is fighting me. I’m trapped in an environment where everyone around me expects me to just overcome it all. I’m trapped in a mind that continues to tell me how stupid I am, how the pain will never end, and I will be like this forever, a shell of a person, never myself again, always stuck here, miserable.

I don’t know what to do. I want to try new doctors for second opinions, but who knows? They may come back with the same result. Furthermore, should I even be thinking about spending more of my parents’ money? I don’t know.

I know that I wish I could go out, get a job, and not have to worry if my health will prevent me from keeping it. I wish I didn’t have to disappoint my parents and use their money for my things when I am a 23 year old college graduate. Above all, I wish I could be happy. It has been so, so long since I’ve been happy, and I’m worried I might never get there again.