I need to make a confession: I am a raging hypocrite. Well, raging might be a bit of an overstatement. But hypocrite, yes. I write posts for this blog every week and some of them contain advice. Usually the advice boils down to: if you go to a doctor and they don’t take your complaints seriously, fire them and find a new doctor. [Note: I’ve since learned that this often isn’t possible for those of you in Canada or some other single payer countries. I sadly have no advice for you and just send you lots of love. Sigh.]
For instance, at the end of my post 4 Out of 5 Doctors…Are Wrong I said, “If I or any of my family members are having strange or unsettling symptoms, I’m not going to take one doctor’s word for it if he or she brushes me off. I’m not even going to take two doctors’ words for it. Even when they mean well, doctors are wrong far too often, and when your life is at stake, you’re a fool to blindly trust what even 4 out of 5 doctors tell you.”
So, have I done what I said? Have I valiantly soldiered on until I found a competent, helpful doctor who could diagnose all of my serious health complaints? Well… Not really.
You see, I’ve been to scads of doctors regarding my weird symptoms over the years. Since the age of 18 I’d estimate just for the autoimmune/POTS-ish symptoms, I’ve seen over ten doctors. This includes two ER docs, five or six primary care physicians, two cardiologists, two rheumatologists, and a psychiatrist.
Of these doctors, approximately three have taken me seriously. (1) My current rheumatologist who I started seeing when I was pregnant (I have a five-month-old daughter). She’s the one who diagnosed me with lupus. I definitely want to keep seeing her. (2) One of the cardiologists took me reasonably seriously, but he never let me know the outcome of my holter monitor and I didn’t follow up because my heart symptoms subsided after the first trimester of my pregnancy, although now they’re back again. (They come and go.) Finally, (3) a psychiatrist I saw in law school was the first doctor to tell me my symptoms weren’t in my head and I needed a full cardiac work up. (In fact, I went into his office telling him another doctor had said I had an anxiety problem and after I went through my symptoms he emphatically told me I didn’t. Thank goodness for that guy.) His words are by far the most helpful because now if a doctor tells me I’m just anxious I can tell them that I’ve been tested by a psychiatrist and he found that I wasn’t. (Not that they care. If they’ve decided I’m crazy, nothing I say is going to change their mind, but at least they can’t pretend pawning me off on a psychiatrist is actually a therapeutic move on their part.)
My point is, I know that I still have weird cardiac symptoms. Sometimes my heart skips beats or it’ll go into bouts of tachycardia. These often follow periods where I have my arms over my head or I’ve had to do a lot of stooping. (Thus, my conviction I have POTS, a disorder characterized by rapid heart rate after standing or other movements.) These periods of tachycardia also coincide with extreme fatigue, which is my most debilitating symptom. My mother has been diagnosed with POTS, part of the reason I even know what it is, and I’ve brought it up with three or four doctors, but no one has ever tested me for it, including the cardiologist I mentioned who did take my complaints seriously.
Working on this blog has made me realize that I need to go back to the doctor and finally get a diagnosis regarding what is really bothering me. I tell people I have lupus, but my dirty secret is that the lupus isn’t what causes my biggest issues. Sure I get the butterfly rash and some joint pain here and there, but it’s the fatigue and fainting that accompanies the rapid heartbeat that is by far the most debilitating, and that’s not strictly lupus-related. (Although POTS does often accompany autoimmune issues. Ugh. Why does this all have to be so complicated?)
So I’ve decided to follow my own advice and finally get a diagnosis. Maybe what I have isn’t POTS; I’m not a doctor, as they like to point out, so let’s see what the testing shows. I figure I might as well chronicle the journey on this blog. First of all, I’m sure my interactions with the medical system will produce a lot of fodder for discussing medical sexism. More than that, though, interacting with the chronic illness community over the last few months is teaching me a lot about myself. So much so that I want to share what I’m learning and the process I’m going through. The process of realizing: (1) I’m really not crazy (even though I have this blog, I still sometimes need reassurance), (2) everyone with a chronic illness goes through this, (3) I’m disabled and it's strangely liberating to realize that, and (4) it’s going to be okay...I hope. I’m pretty sure. I mean, I feel well today so I'm feeling hopeful. Ask me again tomorrow when I’m having a hard time getting out of bed, and I might have a different answer.
While all of my experiences may not be 100% related to medical sexism, almost all of them can be traced back to it. If the medical system weren’t so stacked against women and if society weren’t so biased, thinking of women as weak and hysterical, then I wouldn’t have near the baggage surrounding my medical issues as I do. So wish me luck as I take this journey to figure out what the f**k is actually wrong with me. I’m going to need it!
Continue reading WtF is Wrong With Me? Part 2 here in which I explain why after saying all of this, I actually won't be going to the doctor immediately.