My Special Conditions

Growing up, I always disliked standing out. I always made headlines for all the wrong reasons among my peers and was routinely made fun for them. It’s why going to a school of 50,000 students where I could just blend in and hide sounded so appealing to me. I’m sure at some level it also plays a role in my desire to do work behind the scenes and not get noticed.

As I’ve gotten a little wiser, I realize that it’s not the attention that I fear, but rather the humiliation and the exposure for my inadequacies.  I generally like being in the spotlight, but only if I’m being cast in a positive light. I realize that much of my adult life is based around my attempts to avoid public humiliation. I don’t think this makes me terribly unique. I can’t imagine anyone who likes to stand out for the wrong reasons, but it is something that cripples me more than one would think.

All that makes what’s been going on in my life harder to cope with. If you have seen me since mid September, you probably have noticed that there’s something different about my hair. As in, I’m lacking some of it. I have been diagnosed with an autoimmune disease called “Alopecia Areata”, something that affects less than 2% of the population. In a nutshell, the disease makes my immune system think my hair is invading the body so it attacks and kills it.  Therefore, I have random bald spots on my scalp. Thankfully the disease is entirely cosmetic and I am otherwise very healthy and suffer nothing else other than an odd looking head.

I wasn’t too worried about it at first, as it was only the size of a nickel and limited to one spot on my head. But over time that one spot has grown to the size of an egg, and more bald spots are appearing too. As more of my hair is falling out, so too as my anxiety and consciousness over it. Most people are polite enough to not saying anything or mention it to me, but I know they notice it. Others are less tactful and just blurt out “Uh… what’s going on with your hair?”

While my outward appearance was being altered to my disliking, inwardly my head was also experiencing deep anguish too. I also suffer from something called “cluster headaches”, which affects only 0.1% of the population. It is horrifyingly nicknamed as “suicide headaches” as it is a neurological disease that causes an incredible amount of pain in my head. These headaches last anywhere from 15 minutes to several hours and completely debilitate me for the entire duration. Thankfully these headaches only stay with me for about two weeks at a time, but even then I am fighting through it every day, several times a day and even in the night when I am sleeping. I am currently nearing the end of my two week attack period.

Throughout all this, I have often wondered:

Why? God, Why? Why have you afflicted me with such rare diseases? Why is my hair falling out? Why are you putting me through intense agony? Why is this part of my story?

On bad days, my cries are often whiny and annoying. They only reflect me feeling sorry for myself. On good days, the last question is more reflective and purposeful. Why is this part of my story?

I have spent most of my adult life avoiding being noticed or unique. But there is nothing normal or routine with what I’m going through. My conditions are rare, special and to much of my displeasure, they make me stand out. I don’t have an answer to why this is happening to me, and I doubt I ever really well. But what I do know is that they are part of the story that God has for me. I have no idea why God has chosen to have my hair fall out. I have no idea why God has chosen for me to suffer through my headaches. God has, for whatever reason, chosen to give me two rare diseases and that is my story.

 

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About Jason

Remote worker. Stats and analysis nerd. Soccer lover. View all posts by Jason

2 responses to “My Special Conditions

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