I wrote a post a year ago about being disabled, and recently saw a post on the “Chronically Invisible” Tumblr that really resonated with me. I wanted to write this to reflect my experiences after having been diagnosed with Crohn’s Disease. Some of my experiences may resonate with people who have any kind of chronic condition, others may resonate with people with Crohn’s, and some may be just my own experiences.
I started having symptoms of Crohn’s Disease when I was 15, but didn’t get formally diagnosed until I was 22– almost two years ago. I had never heard of it before I was diagnosed, but as soon as I was, I immediately went and read everything online that I could find out about it. I thought I was prepared and well educated. Unfortunately, there are many things I only found out after a year and a half of dealing with it personally.
Doctors and the internet tell you about common symptoms you may experience, your increased risk for cancer, and some of the treatments you will most likely receive. But no one tells you the other things that come along with having a chronic condition.
No one tells you how it feels to have doctors dismiss your concerns, or how often it will happen. That this person who you’ve put your trust in to make your life bearable (or simply to help you survive) is probably overbooked and overworked, and when you tell them you’re in such agony that you can’t complete daily activities, they’ll shake it off and tell you to come back in two weeks if you aren’t feeling better…then say the same thing when you come back three months later (the next available appointment you could get).
No one tells you about how much time you’ll spend on the phone, arguing with insurance companies and hospitals over bills you know should be covered, but for a multitude of reasons and screw ups, you either need to cough up $200 immediately, or spend an hour and a half on the phone, just to get someone to say they’ll review it and maybe you won’t have to pay it.
No one tells you how hard it is to be on antibiotics when you have gastrointestinal problems because they disrupt your already sensitive GI tract, and how people without GI problems will say things like, “Oh, antibiotics, that’s not a big deal at all,” when you know you’re going to have non-stop diarrhea for weeks after you finish your course of antibiotics.
No one tells you about the drug-resistant yeast infections you’re going to develop every single time you’re put on steroids or antibiotics…which is every time you go to the hospital.
No one tells you that even if you have perfect veins that nurses and phlebotomists compliment, after two years of frequent blood draws and IV’s, your veins will become damaged and every time someone needs to draw blood, it will take several (painful) attempts.
No one tells you about the complete isolation you feel, laying in a hospital bed when you’re unable to sleep at 3 AM, despite being on a cocktail of pharmaceuticals. Or how isolated you feel when you’re surrounded by your healthy friends and family who are talking about their jobs and activities, which you’re too sick to do.
No one tells you how you feel like a bad person when you’re more sad than happy when a friend gets a job, because it just means you’re going to be spending more time alone.
No one tells you that the phrase “what doesn’t kill you makes you stronger” is absolutely true, and you know it’s killing you, just slowly.
No one tells you how much you’ll grow to hate battle metaphors for chronic conditions (“she’s fighting a disease”), because if you are in a battle, it feels like you’re completely unarmed against someone with nuclear weapons, because no matter how hard you “fight,” you can’t win against an incurable disease.
No one tells you how often you have to cancel plans that you’ve been desperately looking forward to because you just don’t feel well enough to do anything.
No one tells you how you start to measure time by doctor appointments, tests, and hospital visits.
No one tells you how much you begin to resent people who don’t take care of their bodies and then complain when they don’t feel well, because you would give literally anything to have some semblance of good health or a functioning body.
No one tells you these things. I can’t figure out whether it would have been better to know them ahead of time or to find them out the hard way. I guess I’ll never know, because no one told me.