I wrote this post to try and organize my thoughts. Sorry if it's messy.
I'm done; I'm over it! I've been only fighting this disease since 16 but I've had enough. I have done everything I could possibly do to be successful and support myself, but I can't control this disease.
For those of you that don't know, I have a disease called Behcet's (it's rare enough for spell check to not recognize it). It started off as getting sick often as a teen and then progressed into what it is today: mouth/skin ulcerations, joint pain, aching, fever, and severe pain in muscles.
Here's an excerpt from the Mayo clinic:
[Behcets] is a rare disorder that causes inflammation in blood vessels throughout your body. The inflammation of Behcet's disease leads to numerous symptoms that may initially seem unrelated. The signs and symptoms of Behcet's disease — which may include mouth sores, eye inflammation, skin rashes and lesions, and genital sores — vary from person to person and may come and go on their own
What you don't see listed is depression, but don't think for a second that it doesn't come with the disease. I've only recently recognized I get depressed when behcets flares up. I'm only 20 years old and already feel like I have the body of a 50 year old man who has worked in manual labor his entire life.
It's terrible and it affects my life in every aspect. I try to hide it as much as I possibly can. It only really shows when I have a bad flare-up. The beginning of 2015 has been really bad - worst I've had yet.
I'm not proud to admit that I've silently wept myself to sleep next to my girlfriend, making sure I don't wake her with my cries of pain. Not just physical pain, but mental pain. Why me? How did this happen? What does my life hold? Is it going to get worse?
Some of you might be screaming at your screen right now "go see a damn doctor!" and I am. But I have been scared to go see a doctor; My mom has the same disease (worse, actually) and the treatments they gave her made the disease more aggressive, causing her to lose sight in both eyes. So, yeah, I'm a little scared to start taking treatments for this.
What if it gets worse? What will happen to me? Will I still be able to work? What if I lose my eye sight and I can't do all of the things I love doing like driving? Or browsing the web? Or programming? I love my mom, she's one of the strongest humans I know, but I can't bare to think about being blind. I'd be severely depressed. How she just took it in stride blows my mind -- I don't think I'm as strong as she is. I mean she raised 3 kids while losing her eye sight and being gravely ill.
That's right. I've decided fuck this disease. I can no longer let it ruin my weekends, my work days, or MY LIFE. It's slowly been eating away at me and my happiness. NO MORE.
The road ahead is, without a doubt, going to be rocky. But I'm okay with that. I'm going to keep my head up and stay positive. I'm going to channel my inner Janet (my mom) and work through this.
If you're a friend of mine reading this just know there are going to be ups and downs with me. If I don't text back it's not because I don't want to talk. All I ask of you guys is to stay positive with me.
If you're going through something similar don't hesitate to reach out to me. We can be strong together, friend.