Category Archives: Chronic Illness

When the Pain Wins

I’m laying in bed, begging my brain to go to sleep, but my thoughts are too focused on the hundreds of tasks left undone. The laundry that still lies, unfolded, in the basket. The dishes that still sit, unwashed, in the kitchen. The table, covered in papers and crayons, that needs to be cleaned off. The floor, sprinkled with dirt, that need to be swept and mopped. 

But here I sit, not doing any of it. And it’s not because I don’t want to do it. Because I want, more than anything, to have the strength and energy to get everything cleaned, put away, and organized. But I can’t. My body physically can’t do it. The pain I feel on a daily basis. Hour by hour. Minute by minute. Second by second. The pain destroys me. Little by little, the pain pecks away at my joy and happiness and excitement. The pain steals my abilities from me. The pain is a slow and silent killer.

I don’t even know how many times I’ve been told, “it can’t hurt THAT bad,” or “it’s not even possible to be in that much pain all the time,” or “just think positive,” or “be more active,” or “it only hurts that much because you let it.”

Most people, if they can’t understand something, will deny what you’re going through. If it makes no sense to them, then it must not be an issue. 

Chronic pain. “Well, at least it’s not cancer.” “You’re so lucky that you get to lay in bed all day.” “It must be nice to be so lazy.”

I would literally give anything to have my life back that I had four years ago. I was able to run. I could lift. I could eat. I could enjoy my life. But my health took a downward spiral. Surgery after surgery after surgery…each knife has taken more from me than the previous one. And now, I’m painfully holding on to my ability to walk. 

I look back at my life and I think about all the times I took my body for granted. I used to be a runner. I used to be a personal trainer. But Ehlers-Danlos Syndrome took that from me. The constant pain takes a mental toll over time. 

I’ve always struggled with depression and anxiety – I think, for as long as I can remember. But as I entered adulthood, I seemed to be able to control it. Running and working out helped a lot also. But after a while, I was in constant pain, so I finally went to the doctor. That’s when I was diagnosed and subsequently had multiple surgeries. After 3 years, I regret almost all of the surgeries I have had. I’m in more pain now than I ever was to begin with. Most days, just walking has me on he verge of tears. 

I don’t know what I’m supposed to do next. I can try another surgery or I can take pain meds. But nothing will ever actually solve the root of the problem. 

But I’m the midst of my pain, I’m also a mom, a wife, a daughter, a sister, a friend, an employee, a coworker. I’m a lot of things to a lot of people. But sometimes, I’m in so much pain that I can’t be anything to anyone.

Thankfully, those closest to me are understanding. They accept me even when I can’t get out of bed because the pain is so high. My kids have had to be more mature than others their same age because of the things that I’m unable to do. I can only hope that as they get older, they’ll understand the value of their health and of their bodies. 

I just don’t want to hurt any more. I don’t know what I’m supposed to do next. I don’t know how I’m supposed to keep up with life. I just wish there was something to look forward to. But I know that I will never in my life get to experience a day without pain. 

So now what….

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For Those Who Don’t Understand

Living with a mental illness can often be a living hell. Before you try to tell me I’m being dramatic, you should reasses how you view mental illness. The name, in and of itself, says ILLNESS. It’s not a choice I make. I don’t CHOOSE to be depressed. I don’t CHOOSE to be anxious. I don’t CHOOSE to be emotionally unstable. And yet, I am all of those things.  

 I know many people who, although they mean well, simply don’t get it. I’ve been told, “just be happy,” or “stop worrying,” or “can’t you just calm down,” or “just be normal, like everyone else.” The problem with all of these statements is that it completely invalidates who I am and what I feel. What if you told someone with a broken leg to just get up and walk? Unless you’re Jesus, you just sound like an idiot. Same concept.  

 My feelings, while you may not understand them (and don’t worry, because I often don’t understand them either), are just as legitimate as yours. My life might look okay from the outside, so you can’t understand why I feel the way I do. But on the inside, I’m a mess of emotions and chaos. You may not understand my overwhelming fear of being in large crowds or my tendency to completely shut down when I’m upset, but that doesn’t make it any less real. 

We live in a world that caters to healthy people. But when you’re healthy, you don’t realize how true that is. Until you’ve fought a war against yourself, every day of your life, you can’t understand how hard it is to function in a world that isn’t made for you. 

 I’m tired of being ashamed and trying to hide my mental illness. Because you know what, Jesus loves me even with my self-harm scars and anxiety and watery eyes and depression and PTSD and my inability to focus – He loves all of me. And if Jesus isn’t ashamed of my mental illness, then why should I be. 

So next time you meet someone who seems a bit more anxious than you think necessary or more sad than you think they should be, try having some compassion instead of judgement. Those of us with mental illnesses feel our emotions – whether happy or sad, on a much deeper level than most.  

 We’re not trying to make your life more difficult. We’re simply trying to get through life the only way we know how. 


My Life With Chronic Illness

Last year, I was diagnosed with Elhers-Danlos Syndrome (EDS). EDS effects my body’s college production and leaves all of my connective tissues – mainly my joints, feeling weak and hypermobile. I’m constantly in pain, and yet I get accused of being whiney or dramatic.   
I have had joint pains my entire life. As a kid, I was told that it was just growing pains. I learned to understand that being in pain was just my normal, and I didn’t know for a long time that it wasn’t normal for everyone. I have already undergone 4 surgeries and have at least 1 more surgery pending. 

  
Most recently, after 6 weeks of intense headaches and random vision disturbances, I went to the eye doctor for a routine eye exam and he sent me straight to the ER. My optic nerves were swollen and bleeding. The last few days have been a whirlwind and I received a diagnosis of pseudotumor cerebri (PTC). With PTC, my brain is essentially reacting like I have a tumor, but there is no tumor. I’ve had two ER visits in the last 48 hours and have lost part of vision (hopefully only temporary). 

  
I feel like there’s something wrong with me. I keep asking why this is happening to me. I ask why I’m in so much pain. But no one can really tell me….it’s just the luck of the draw.

  
Chronic illness and chronic pain are miserable. No one understands it. People think I look fine, so I should feel fine…but most of the time I feel like I’ve been hit by a bus. 

  
Today, I’m in incredible pain from a lumbar puncture. I want to feel “normal” and not be in so much pain. I want to function at my normal level or productivity…but I simply can’t. 

  
Some days are good and some days are bad. I feel like my life is like a wheel of future, I never know where it’s going to stop. 

  
I often have to cancel plans with friends because my pain level gets too high. Or I struggle to get out of bed because it hurts to move.

  
So, I ask you to stop thinking I’m whiney or dramatic and understand that my life is much, much different than yours.


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