A few weeks ago, I had an appointment with my cardiologist who ordered a bunch of tests because, “Nothing about you is ever straightforward.” He was talking about my health because nothing ever is. A heart infection that went undetected (and which I had no symptoms) for nearly a year before it just up and killed me (109 degree fevers are no joke) and even after it killed me, I initially tested negative. Or the one-in-two million autoimmune disease that made my kidneys fail quickly and my lungs fill with fluid, nearly killing me again (same year as the heart infection because when it rains, it pours…). Then there is the number of times I’ve been misdiagnosed from bone marrow to blood disorders to neurological conditions because – why not? My husband called me “the statistic” – I’m one in whatever – I’m that figure. I’m not going to lie – it kind of gets old.
There are a bunch of fine print when you’re a “statistical impossibility” as one of my neurosurgeons called me.
Fine Print A: Made of Glass
I am treated (by everyone pretty much: family, husband, friends, and every doctor or nurse who has read my file) like I’m made of glass. If I feel run down, there is talk of maybe going to the ER. If I think I have the flu or some basic “normal” illness, I am seen immediately, likely in a hospital setting, because having a regular illness can start a chain reaction when it comes to preexisting conditions: heart, kidneys, lung, blood.
As someone who has survived a lot on his own, sometimes this is frustrating. I’m tough as shit, and I don’t want people to see me as anything other than that. I’m strong, even if I am breakable in some ways (brittle bone disease, so I actually am breakable – literally). I know my body and if I feel a hospital is necessary, I’ll go. But if doctors, nurses or my husband (out of love and concern for me, friends and family are the same in this reaction) had their way – I would be going to the hospital a lot more often. The last time this happened (I was just ran down and dehydrated) the doctor actually commended my husband on bringing me in. “You did the right thing. He [as in me] is a very vulnerable adult.”
Fine Print B: Fear Factor
Whenever I go to a new doctor or to the ER, it is almost comical to see. There is the “Yeah, okay…” followed by the “Am I being punked…” and then the “You’re making this up,” and then they look at the file to see I am in fact not making anything up and it quickly turns into “Oh shit!” Then they go get a doctor who takes the rest of my history but not before giving me a cursory examination to make sure I’m actually breathing.
It also makes it difficult when dealing with doctors, especially primary care. I’m lucky with my current doctor, but it took a long time to find one who is comfortable with all of my stuff. For example, I had the flu a few years ago and needed Tamiflu. I had a big-deal fever and tested negative for strep, it was flu season and no question I had it, but my primary care doctor wanted my kidney doctor to see me and prescribe it. Because at the time my kidneys were a big deal. But kidney specialists are kidney doctors, and because they’re specialists they can’t just see you unless it’s an emergency. You don’t see a kidney specialist because you have a cold. It’s just silly. But this is the norm. No one wants to be the decision maker for a lot of my basic medical needs. Because I’m just one of those “complicated” cases.
Fine Print C: No Information
Because I have a lot of super rare diseases, there is often little to no information about prognosis, recurrence or complications. So you kind of live in a bubble and just have to play it all by ear. You don’t know what your chances are for X or Y, or what any of it means. You don’t even have a clear prognosis on how much time you have left. Though I have always been determined to prove any “time left” estimate wrong, and I have before – there just isn’t a baseline.
I have three different things where this applies. So if you have one thing you don’t know anything about, imagine having three of them on top of a lot of other more known, but no less serious health stuff. Asking a doctor a question becomes silly because they tell you they don’t know because there aren’t studies or data out there to answer the question. And I’ve looked. This isn’t laziness – it’s just how it is. You just don’t know. On the flip side, you can’t even have a general checkup without a bunch of doctors wanting to monitor everything because you become the data so that in a decade or two, maybe there is such studies available. You’re the unwilling celebrity in any medical setting and constantly asked to do volunteer things just to collect info for the future.
Fine Print D: Wait!
There is a lot of waiting. I’ve never just been diagnosed with something. It’s always a long, drawn out process full of swings and misses, wide nets of tests and a back and forth that usually lasts weeks to months before they figure it out. Now no one likes waiting, and I’m not saying it isn’t frustrating, but it’s been my life for twenty years, so I actually cope with this really well. The trick is to focus on the things you can control and put the rest out of your mind. You can’t banish it (at least I’ve never been able to) but it can be there in the background, barely noticeable as you focus on these minute details that you can actually control completely.
It’s something my husband is currently having to learn. It sucks and it’s foreign and to any person who hasn’t gone through it – probably bizarre but it’s the only way to get through it. Seeing him try, is reminding me what it was like for me, realizing “This is how you get through this” and it is both humbling and makes me grateful because the learning curve of having to wait meant you felt the weight of the world on you 24/7 as you waited weeks – months. I don’t envy where he is at, at all.
Bottom line: Waiting sucks. It never gets easier or even more tolerable, you just get more adept at dealing with all of the badness of waiting.
Fine Print E: Walk It Back
I swear that misdiagnoses or controversial diagnoses are my specialty. So many times I have had doctors say I had X, and then come back and said it was actually Y, but only after treatment for X didn’t work. Or they’ll say I don’t have something, when in fact later tests prove that I do. Other diagnoses like Epilepsy are hard-fought because a huge group of specialists are split down the middle – 50/50. You do, you don’t, you most certainly do, you definitely don’t. It’s amusing when these exchanges actually become heated in front of you. You just watch a bunch of doctors arguing about you, while forgetting you’re actually there.
Being the statistic or a “statistical impossibility” is not that fun. I mean most people want to be “special”, but as someone who is most definitely “special” I would love to be un-special. Seriously.
And right now, I am reminded of how special I am, as I wait and deal and whatever. And I am. I’m doing fine – I’m solid. It’s just when you’re in the middle of being fine, you kind of realize you wish you didn’t have to be all of the time.