So after receiving two requests for this repost, I’ve decided to share this article once again. If you have any requests on topics you’d like to see or have me repost some of my earlier work, you can contact me at email@example.com or at About Us Page
The only predictability with my illnesses is how unpredictable it can be at times. 7 years into my Chronic Illness Journey and still my body continues to surprise me with all that can go wrong in a matter of moments.
It’s inevitable. No way around it. There comes a moment when I meet someone new and have to make the decision of whether to tell them my story right away; the good, the bad, the ugly or whether I will choose to hide my story for as long as I can because I want to be known as something other than “The Sick Girl.”
This is a daily battle I have with myself every single day. Do I tell my story and hope they stick around after hearing all of the brutally honest descriptions that make up my Chronically Ill life? Or do I want to live as ‘normally’ as I can for as long as I can before the inevitable happens and they slowly start pushing themselves out of my life because they can’t deal with the mess that is my Illnesses?
I know that eventually my story always comes out. Sometimes it is planned, while other times it just comes spewing out all at once and I am left with them staring at me with wide eyes and their mouth gaping open. I have told my story so many times online and face to face that sometimes, I think seriously about printing out fliers so I don’t have to explain myself all over again.
What most people don’t understand is that when I do decide to share my story, when I decide I can trust them with the hell that is my life, the medical/physical part of managing my illnesses has become easy over time. It’s systematic. Routine.
It’s everything else about my story that is hard.
Cancelling plans because you can’t get up out of bed from the pain. Not wanting to explain that you can’t go out to eat because you don’t want to be the wierdo that embarasses whoever you are with that tells the waiter all the stuff you can’t eat, and you can’t go to a bar either because alcohol tears up your guts. Not even wanting to have friends over in case you have to deal with unexpected symptoms which leads to them having to leave early or not hang out at all. I’ve cancelled plans so many times now that people just stopped inviting me places — and I don’t blame them. It’s sort of a relief.
You never know how much to reveal about your illnesses to the people you spend any amount of time with; some will be sympathetic and understanding, others will see it as a weakness. Your friends and sometimes even family might be supportive at first, but will grow frustrated over time and start putting up a wall between you and them until you just don’t talk anymore.
It’s hard to keep telling them that you’re sorry, but you will have this thing for life. You will cry to them over and over, apologizing for letting them down. Trying to make new friends is a nightmare because you’re not sure what to tell them: I have these incurable but non fatal diseases and my symptoms can be unpredictable and brutal at times but please don’t be scared to be around me.
You will cry wondering what kind of life you might have had if you didn’t have this thing inside of you. tearing you up from the inside outYou’ll have nightmares about getting your colon removed and living with an ostomy bag. You’ll pretend you don’t want kids because the fear of passing on your diseases is too great; the guilt would bury you alive. You’ll be positive and brave on social media; your friends will tell you that you’re an inspiration.
Would they say that if they knew you spend some days holding your breath under the covers? That you feel like you live on another planet — one they can’t come to but you can’t leave? That you’d like to sink into a haze of hospital-provided opiates and never return until there is a cure for your incurable but non fatal illnesses?
I’m alive and I have three incurable and yet non fatal diseases that won’t go ever go away. This is my reality.
This is also my reality: Living as honestly and as thankfully as I can. Scribbling in a daily journal, even if it’s one line that says “today is just okay.” Giving back to people who have it much worse than I do. Enjoying every bite of food I’m able to eat. Trying not to worry so much about my appearance or desirability to society. Watching people on the sidewalk and imagining happy lives for them. Connecting with chronic illness, animal rescue, and Spoonie communities online.
A lot of days, I feel “normal.” A lot of days I don’t. But I’m here. I’m here. I’m here.