If you’re familiar with our blog, you know this is a compilation of a multiple’s insiders take on living in a singleton’s world. You know that agoraphobia is a daily struggle. You know that we are on disability because it can sometimes take something close to divine intervention to get us out of the house. You also probably know we’re terrified of doctors.
Iatrophobia is the fear of doctors.
Iatrophobia does not mix well with Diabetes or PCOS (Polycystic Ovary Syndrome). Random but frequent syncope (fainting) doesn’t make such a great pairing either. Add on the Epi Scleritis flare ups and we’re not in such good shape at all. With diagnoses like Diabetes and PCOS, we have a life sentence on medication. We require regular visits with a general practitioner, an endocrinologist, an ophthalmologist and a gynecologist for exams, blood work and medication adjustments.
The last time we received treatment was August of 2010 when we saw our endocrinologist. She sent us to the lab for some regular blood work and a Dexamethasone Suppression test. She wanted to rule out Cushing’s Syndrome (for weeks we agonized over the possibility of having a tumor). It turned out that we didn’t have Cushing’s, but instead, we had PCOS.
We were sent a letter in the mail with the test results. Included was a single printout of an article on PCOS. We were relieved and confused and numb and scared and didn’t know what to do. The note from our doctor told us to keep the gynecological appointment our primary physician made for us with a specialist down the hall from his office. That was it.
So Ben helped us do more research so we could get as much information about our newest diagnosis. We learned that it made sense. We knew the body was insulin-resistant. This is what’s made treating the diabetes so complicated.
One year prior, nothing was lowering our blood sugar. Adjusting to a strict diet didn’t help. Increasing our insulin didn’t help. Taking pills didn’t help. We saw a Diabetes Specialist who got us on a different kind of insulin. A very concentrated one. 5X the strength of regular. Dangerous, but effective. We saw results almost immediately. Good and bad. Grateful that our blood sugar was decreasing and we were starting to feel better (less headaches, disorientation and nausea), we weren’t thrilled about the rapid weight gain. We were already heavy (which absolutely contributed to the diagnosis of Diabetes in the first place) and had finally stabilized things so we were no longer gaining weight. This new weight gain felt like all our hard work over the last two years was pointless.
We felt defeated and disappointed in ourselves. This is when Elle began to deteriorate. For nearly two decades she was responsible for the body’s physical and mental health. She played patient when we had to see doctors, she took meds when we were prescribed them, she was the one to get our depressed butt to a therapist, she was the one that motivated us into exercising.
But that appointment with the gynecologist was the death of her. Almost literally. By the time we saw him in December, we had nearly 5 months to worry and obsess over the appointment. We have a hard enough time getting out of the house to grab some groceries. Convincing us to keep a medical appointment is practically impossible. We cancel all the time. We pump ourselves up a couple weeks before. We remind ourselves how much we need to go. We bargain and tell ourselves that it’ll be an hour of hell and then we can come home and do something self-soothing to wash it all away.
However, a day or two before the appointment, we’re in complete freak mode. We can’t think of anything else. All we can think about and all we can dream about is being trapped in some small room with some cold, unfeeling stranger who somehow has not only the right, but the expectation to touch us while we lie there trying to die and we inevitably cancel.
But we were trying to be strong and courageous this time. From what we read, we needed to get some hormone therapy and the only way to do that was to consent to a gynecological exam first. So Elle took us to the appointment where we met the coldest, most insulting and belittling medical professional we could have imagined for this already intimidating and daunting experience. And as if we weren’t already iatrophobic enough, he treated her like she was stupid and worthless, like her “laziness” was the only thing preventing her from being completely healthy.
No, Mr. Doctor, we can’t “just get off that couch” and do jumping jacks or 20 minutes of aerobics a day. We can’t even take a walk around the block. We’re in constant back pain and are lucky if we can even stand for more than 5 minutes at a time. And when we are having a “good” back day, we’re terrified of stepping outside our front door because we’re so consumed with anxiety we literally can’t breathe.
When Elle tried to explain why she is either in bed or on the couch for most of her day, it was YOUR responsibility as her doctor to LISTEN, to take notes, to try and understand your patient. NOT to judge her and interrupt her before she could even finish one sentence. NOT to accuse her of being lazy and not wanting to take care of herself. NOT to tell her she should be dead!
This is why Elle refused to undress. She refused to let him examine her. She flew out of the office with Ben barely keeping up behind her. We were supposed to stop by the lab and get some blood work down on our way out. She tried. She couldn’t have known that it was “Blood Draw Training Day” though. Just our luck. It never happened and we never came back. We had other follow-up appointments with our other doctors since, but couldn’t keep them. We continued to see our therapist, F, but even she turned out to be harmful in the end.
Our meds are running out. We’ve gone for several months not taking our meds as prescribed because we’re trying to stretch them out. We’ve exhausted our refills and our doctors won’t write new scripts until they’ve seen us. Makes sense, but it’s agonizing to think of going back.
Elle is no longer here. And it breaks my heart. I don’t talk about it to anyone. It hurts too much. But I know they all know. Elle has taken refuge with her twin, Kate, in the south wing of our internal home. I cannot sense her though, other than the rare moments via Kate, but I am glad she is near and not gone missing like she had been before. Elle is my mentor. She taught me how to filter. Some days I feel lost without her. Some days I feel weak with grief.
But I have to take over. There is the option of creating someone new, someone to take over, but in my heart, I just cannot help but hope Elle will be able to take over again. Maybe it’s silly and a maybe it’s selfish. But I will learn my lesson if I need to. For now though, I will go to the appointments.
Ben is taking a day off of work next month for a test in the afternoon. Yesterday we called all of our doctors. This in itself was difficult. Ben called two of them, but because two of the offices wouldn’t speak to him on our behalf, I had to call them. Luckily the two receptionists were patient and professional, very unlike the way we’d been treated a year ago at the same clinic. Maybe we’re getting a break.
So now, on the same day as Ben’s appointment, we have an appointment with our eye doctor in the morning and our general practitioner who is always over booked, now has a female nurse practitioner working with him and we’ll be seeing her two hours after. If we’re on schedule, we’ll make it just in time to Ben’s appointment. And then later in June, we’ll be seeing our endocrinologist and gynecologist. We just have to keep these appointments and make our meds last.
The hardest part leading up to this is finding the courage to go in for the blood work before. We’ve written about how hard this is for us before. I need to keep myself centered. I need to do what it takes to get this done. Honestly though, I am terrified. I know it’s not all me. I know it’s most likely the combination of all our fears and traumatic experiences that make me want crawl under a rock.
I’m not as strong as I used to be. None of us are since we suffered from a breakdown of sorts a few months ago. But after all we’ve survived, we can’t just succumb to these diseases without fighting to stay alive as long as we can. It would be so easy to give up now. It would be so easy to throw our hands up and say “I can’t do this” and “this is just too hard” while we retreat further and further inside.
But I can be stubborn, too. I don’t want to give up. Yes, we are iatrophobic. We are terrified of doctors. But we’re more terrified of HIM winning.
And as I’m sitting here, I can’t help but wonder if I’m a fraud. Am I saying this because I truly believe it? Or because I’m always the eternal optimist and it feels like we need a little peptalk?
All I know is it’s going to be an awfully long month waiting for the first 2 of these appointments. I can already feel the panic seeping through my veins. My filtering is not what it used to be. I’m not in control. I’m not able to focus all the time. Sometimes I wonder if we should look for another therapist. But then I think for a second and realize…
There’s just no way. We’re too afraid to try that again. We’re more iatrophobic than ever.