I have never felt whole. This isn’t a devastating fact; it’s just what it is. When you receive diagnoses, go in for a multitude of tests, and have to take handfuls of pills, it becomes impossible to see yourself as whole. Everything gets broken down into what isn’t functioning today—what isn’t working. You have to figure out which doctor to call because no one doctor can treat everything.
You realize this quickly when you go to one ENT, and end up seeing four or five by the time you’re done because the ear doctor doesn’t deal with the sinuses and most definitely doesn’t deal with the throat. At the end of the day, you start to see yourself as broken pieces. My right arm is fairly cooperative, for example; meanwhile, my left arm hates me. When a new piece breaks, I feel betrayed.
I found out at midnight one day last fall that another piece of me had broken. I found this out while I was reading a book on resilience. I had been thinking at the time that maybe I should put this book aside for a time when I really needed it, because up until that particular moment, I’d felt like there was no new adversity to overcome. Oh, life, you’re so funny.
The news was sent to me through an online chart, which felt horribly distant to me. It was very mechanical, of course, and seemingly regimented. I didn’t get to see that glimpse of sadness in my doctor’s face before he broke the news.
This time, it was my pancreas. I’m not sure if I’m supposed to be sad about this. How can you grieve for an organ you’ve never really thought about before? For the life of me, I can’t tell you how my liver or spleen are doing these days, but I would hope well. I now know the cause of some of my symptoms, but the fact that I know really doesn’t impact my life in any way. Everything—and nothing—has changed.
It’s so easy to get frustrated with yourself. Sometimes, it hits me in waves. I’m never really fully prepared for it. I’ll be fine for days, and then, bam, I’ll realize that I’m kind of a constellation of health issues. It’s a split issue of knowing that I must for a time live within the disappointment, that it’s something I need to acknowledge and deal with, yet always trying to set a certain amount of time for myself to be sad before I know I need to move on. Life moves on without you otherwise.
It’s difficult to live life with even one diagnosis, as many of you know. Chronic illness can be very limiting, even though you try not to let it limit you. But if you do not know anything different, you adjust. You learn to accept what you can’t do, even if there is, at times, a twinge of pain for the way of life you never get to have.
It frightens me when I read on different online discussion boards that young people who have similar or the same diagnoses as mine have passed away. I know in life that we’re never guaranteed a certain amount of time, but it gets me thinking about what I could do differently that they didn’t do. How can I know my body better or stop ignoring problems that I was just hoping would go away?
Medical alert bracelets are a necessity when you have health issues that could require very specific emergency care. Throughout college, I had these really adorable interchangeable beaded bands. The metal portion was engraved on both sides. Then I reached a point where I needed to carry a piece of paper with basic information—my doctors, my allergies, my medications, and my health conditions. Then that list grew. I have a lot of allergies and have at times in my life been on more medications than the number of years I’ve been alive.
I started making the form in an adorable double column, because I could not possibly allow my health information form to get to two pages. Then a few lines trickled onto the next page. It was an inevitability. Then I filled two pages. I’m dangerously close to needing a third page.
These forms are always with me. I have copies in my purse and in the car. I started to think about who is important, and who might need these forms just in case I was around a friend and something happened.
The first person to get a copy of this form was my best friend, Shelly, for obvious reasons. She’s around a lot, has taken me to the ER before, and she travels with me. Providing her with this information was an afterthought, as she mostly knew everything.
A med student I was dating also asked to have a copy of this form. At that point, it made sense. It’s not like he didn’t know I had health issues, but I had a sneaking suspicion that he would then look up every single one of my health conditions. He did get a somewhat altered copy of my health information, though.
But giving him a copy was a very different kind of moment than when I pull out my pills around mealtime at conferences and my friends joke around, saying, “Oh, it’s Sami’s pill time. Anything good?” My pancreas enzyme pills, which help me break down and absorb the food I eat, are made from pig pancreas, and that can be kind of fun to joke about. Yet when someone looks at your entire medical history laid out on a single-spaced page, it’s the most bare and exposed you can feel.
Since then, when I have dated someone, I’ve let him know where in my purse the information is, because, as of recently, I haven’t felt like repeating that process. No one has been serious enough.
When I come to NHF events, I carry a sealed envelope of information and give it to one of my friends in case something comes up. My friend since middle school, who is now a doctor, asked to have my medical information because he works at the hospital I go to. He also has an abbreviated medical information copy—leaving out the less pertinent events that wouldn’t make a difference in my care. I want to be able to have some things that are just mine. It’s hard not to feel defined by how many clots I’ve had or how many weird infections have happened.
I know that at some point I’ll be comfortable in my own medical-information skin. I am always open to answering any questions people have, but I’m always a little startled when people throw things out there like, “Can you have kids with your clotting disorder?” or, “How many pills do you take a day?”
I answer because I know that someone has to. There have to be people out there who are willing to take a step forward to make having a chronic disease less of a hidden or publicly discomfiting situation. It’s my body that’s a bit broken, not my personality, and not my spirit. I’ll speak up loud if I have to because, well, my voice is naturally loud and I don’t know how to be any other way.
It doesn’t really matter if it’s a 15-piece puzzle set, or one with a thousand pieces, because at the end of the day it still creates the same picture: I’m me. The pieces collected in my past have never defined me, and there isn’t a reason for them to do so now. Each piece just allows me to see more clearly and gain a greater sense of self.