Category Archives: Chronic Pain

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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