This blog is both a professional voice for me, and in many ways, a personal one. It’s a tightrope I walk: how much information is TMI? and how much is fine, because I live a very public life and have nothing to hide? Most of the time, the obscuring veil I pull across posts has more to do with my kids and husband that it does about myself. I am not a perfect person, and I have no desire to portray myself through rose-colored lenses. I have failings, and weaknesses, and I’d rather acknowledge them rather than whitewash over them and open myself up to a troll vomiting them up with an evil giggle later down the road – and that’s not an empty concern. I’ve had it happen. I pulled back from participation in Sad Puppies because of a troll comment that could have impacted my kids. So, yeah. It’s a careful balancing act.
I say all that, because I’m about to talk about something personal, which you probably guessed. I’m going to talk about it because there’s a lesson learned that may help others, and for that, it’s worth being a little vulnerable. This last week, I had a little health scare. Now, this isn’t something I’d usually talk about – I roll with it, and maybe talk to a few people close to me as I’m dealing, and move on. But what happened while I was seeking help was… a problem. And as I’ve recovered and feel human and can think clearly, I’m realizing how much of a problem it was, and could have been, and could be in the future if I don’t catch this now and stop it. Part of the problem is probably unique to me, although I suspect it’s not, and part of the problem is endemic to the system. I started it: I was apologizing for being sick.
I do this a lot, I’m told. I’m often not conscious of it myself, because, well, I’m sick. But I hate that I live in this fragile shell of a body which breaks down at the most inconvenient times for the oddest reasons. Which is why I’ve had untreated walking pneumonia that darn near killed me at least once, and probably three times, on top of the times I was actually seen and treated. But anywhoo… I hate being sick, and I hate inconveniencing my family and work when I am incapable of performing my duties. Which is why the second part of the problem happened.
I’d been dealing with migraines, which was slightly odd as over the last two or three years I’ve had them rarely – once or twice a year – and then last week I had one, this week I had one that caught me midday at work, and then the next day I was still having a nasty headache (not quite migraine level) and after work I’d taken the girls shopping, and by the time I came home I was blatantly sick. Head pounding, tinnitus, tight chest (had to think to breathe), and generally feeling ‘weird’ so I sat down for a few minutes, then took my blood pressure with the little wrist cuff we use to monitor bp at home (usually that’s the First Reader because we’ve been trying to prove his bp is not, actually, that high. White Coat Fever. But I digress). I didn’t like the number, so I sat a while longer and took it again. And then I called a friend, so to speak. I ran the number by a friend who is a nurse. She didn’t like the number, either. Some time later, and a few more readings that were consistently very high, and she and the First Reader convinced me to get to the ER. And here’s where the first problem occurred. Only I can’t blame them for this: I was being apologetic for being sick, and I really really hate to bother the ER because I wasn’t dying… They only heard ‘chest discomfort’ and leapt into action.
So I spent four hours in the ER being monitored for a heart attack, which I wasn’t having and had never thought I was, and feeling very ill, and beginning to wonder if this was all in my head. Had I overreacted? So I downplayed my symptoms, because you do, and I stressed over feeling like I was causing work for emergency workers who after all had better things to do than take care of me. They sent me home with a recommendation to call my own doctor and ask to have a stress test scheduled in a week, oh, and here’s a note, don’t go to work tomorrow and get some rest.
I went home, still feeling like crap but at least I knew I wasn’t having a heart attack, or a blood clot in my lungs. And of course, I went to work in the morning. Because I’d convinced myself that if it wasn’t serious, I was being silly, so sorry I am sick, I’d better just go to work. And let me point out here that there are workplaces where they expect you to work unless you are literally on death’s door. I’m lucky, I don’t have that. I have a workplace where if I come in sick, I can expect them to treat me gently like I have leprosy or something, and tell me firmly to Go Home. It’s very nice. The flip side of that, of course, is that I’m quite loyal above and beyond my natural workaholic habit. I went to work, and very soon knew that had been a mistake. I couldn’t breathe. I couldn’t walk from my desk to the lab bench without being dizzy. I called the doctor’s office and asked to schedule that visit, mentioning I’d been to the ER, and which ER… and this is where the second problem was exacerbated. I can’t really blame the ER for leaping to ‘chest pain’ heart attack conclusions. I thought I might be nearing stroke, from how I felt and the symptoms, but I didn’t verbalize that properly as I was sick and apologetic. When I called the doctor’s office, I thought I was clear enough that I was short of breath and dizzy. Evidently not.
When I got to the appointment, I went through the initial visit steps in a fog. I was complimented on having lost weight in the two weeks since I’d been in last (for an unrelated issue) and told my bp was fine, which didn’t surprise me. I felt sick, but not the same weird feeling when my bp was spiking. I explained again why I was there, and what the ER had suggested. The nurse left, the Dr. came in, listened to my chest, told me that my heart and lungs sounded fine to him. My blood pressure was normal. He told me to stop taking my bp at home, home devices are not accurate, and then he said ‘you should see your regular doctor in a month about your blood pressure. And you should lose weight.’
I sat there trying to breathe, unable to figure out what to say. I tried to tell him I was having trouble breathing. He amended his suggestion to seeing my doctor in two to four weeks. I left.
I’m not quite sure how I made it home. I was driving a familiar route, thank goodness, because I was crying uncontrollably all the way home, and still having trouble breathing. I wasn’t quite sure what was wrong – as I told friends later, I felt like I was losing my mind, because I didn’t understand my own reaction at the time. They did. They pointed out, as one friend said, that I was ‘beating myself up with old tapes.’ You see, I had been told for years every time I was sick that I was a hypochondriac. Over and over, every time I was sick, or tired, or in any way not living up to whatever it was he wanted, I was the problem, and I was whiny, and I was making it all up, and it was ‘all in my head.’ So when the doctor dismissed me without even a suggestion of help… heck, I would even have taken the straight-up ‘you’re having a panic attack’ because there are things you can do for that (although that was not, in the end, what the problem was up until he sent me home at which point I had a full-on breakdown). I tried to rest, I tried to tell myself that if it was all in my head, at least I could control it… but I couldn’t.
As a result of that visit, I will be leaving the practice where I’ve been seen for several years now. My family, as well, will be finding a new doctor’s office alongside me. Because the problem wasn’t that I was being apologetic for being sick. That is, I’m told, a fairly normal thing among women, particularly women with families and a traditional upbringing. And even more so among women with a traumatic past, as I have. The problem was that the doctor heard what he wanted to hear, and when he didn’t see that there was a problem in that specific, narrow area, he stopped listening and mentally moved on to the next patient, dismissing the one in front of him rather than trying to determine the cause of the distress. I was physically ill. I hadn’t slept well in days, and was having serious recurring headaches. But I wasn’t having a heart attack, nor did I have pneumonia. So… he sent me home.
The doctor patient relationship is an interesting and complex one. It’s not a simple as hiring someone for their services. We don’t pour out our woes, most intimate details, and expect, say, a plumber to listen and then tell us what’s wrong. A plumber’s job is a great deal more straightforward. Pipes are so much simpler than a human body! Culturally, we idealize doctors, which is both understandable – they do, after all, come into the exam room with a lot more education than most, and they do seem to have a grasp on the mysteries of anatomy and physiology. And yet. Some doctors are not competent to practice medicine. I’m not necessarily saying this doctor was incompetent. I am saying he was wrong in how he dealt with me. And that’s something I would like to see him be made aware of, before he sends someone home to get them out of his hair and they die. Again, I do understand that doctors in the modern American health system have had the ability to take a holistic approach to patient care mostly wrenched away from them. I’ve had conversations with my own doctor on the pressures they face behind the scenes. And those pressures do take a toll on the quality of medicine they can minister to their patients.
What this means is that you cannot walk in apologetic for being sick, and downplaying what’s going on. For me, that’s very difficult. I’m used to hiding, in one way or another, how bad I feel. Presenting a calm face to the world while dealing with pain in a private compartment I allow very few access to. It’s hard, really surprisingly hard, to break that open and tell a stranger what’s going on. And that reluctance on my part, paired with a doctor who only has a few minutes with me, may not have eaten all day, doesn’t know what my baseline (not only of vital signs, but simple appearance and posture) looks like, and really, doesn’t care… That’s the lesson I’m hoping to pass on. You have to push past your natural and comfortable boundaries, and lay out the whole list of symptoms. The doctor can’t help put the puzzle together into a coherent picture if they don’t know everything, or at the very least, enough to deduce the missing pieces. If you can’t do it, take someone with you who can advocate, and who knows everything you know.
As for me? Well, my friend with her medical knowledge and her knowledge of me, thought I was having an autoimmune problem, likely stress-induced, and she suggested I try an antihistamine, which might help, and couldn’t hurt. Some hours later, I was able to breathe comfortably again, and able to really sleep for the first time in days. Very quickly, I felt human once more, and started to analyze what had gone so badly wrong while the crisis was upon me. Today I feel like myself, with a tiny headache, and know that all I need is a bit more rest to be fully restored.
Next time I have to go to a doctor – and it’s going to be a while before I will, even though logically I know what happened, trust isn’t easy to rebuild – I will keep this in mind. If you need to, walk in with a written list of what’s wrong, so you don’t forget or leave something out either because you get anxious, or you’re too sick to think straight like I was. Take someone along for support and if necessary, advocacy. And don’t ‘sorry I’m sick’ in the doctor’s office, or at home. It’s not your fault you are sick. You can’t stop being sick magically through refusing to admit that you are – and that includes mental illness! – so allow your loved ones to take care of you. And if you’re on your own, take care of yourself. For that matter, taking care of yourself when you’re steering a family through life is vital: if you break down, who will take care of them?