Invisible illness sucks

I guess yesterday was rare diseases day. Which I missed because I was too busy coping with my invisible illness. So I’ll use today to rant about the healthcare system. It’s always a good day for that. 

I rant because my illness is not particularly rare, I don’t think, it’s just that no one has typically heard of it (I have dysautonomia). It took me years if not decades to arrive at this diagnosis because I’m a girl and I have a history of depression and anxiety. My illness, as it manifests in me, means that all the stuff you don’t have to think about (digestion, temperature regulation, and circulation) is jacked up. Specifically, my heart beats normally if I’m lying down flat, but as soon as I move things get hairy: my body does not understand how to get blood back up to my head, so my heart races and I often get flushed and feel sick. I am dizzy most of the time. I fall down a lot. And this elevated heart rate thing? Makes me feel like I’m exercising most of every day. Not surprisingly I am tired all the time. Like really tired. If I don’t rest often, I end up in bed for days barely able to get up. 

All of that looks suspiciously LIKE depression and anxiety, doesn’t it? Doctors saw a patient complaining of tachycardia, fatigue, and excessive sleeping. Slam dunk. Not suprisingly, none of the years of poisonous pharmaceuticals I took for years did a thing for those symptoms. Doctors are trained to analyze this stuff as follows: the patient has a mental state that produces physical symptoms. But in many cases, the physical symptoms CAUSE the mental state. Lightbulb! Even if you’re in a state of Polyanna-like nirvana, but then your heart races and you get hot all over and dizzy, I can pretty much guarantee you will feel anxiety. If you’re tired all the time, you quit doing anything extra, like going out. If you get tired enough, you just can’t get out of bed some days. If you can’t get out of bed and do the stuff you want to do, you get pretty gloomy about it. Ergo, to doctors, you are depressed. 

Feminist sidebar: I firmly believe that this does not happen to men with the frequency and extent that it does to women. I have flat-out (ha) fainted repeatedly and still been told that I am just anxious. This is a life-limiting symptom, as are excessive fatigue and activity intolerance, yet none of this was ever investigated. If a man shows up in an ER having fainted, being unable to get out of bed, etc, it would be taken seriously and appropriate medical testing would be done. 

Case in point: last year I had a near-syncopal event at work (I didn’t totally lose consciousness, but ended up on the floor not able to communicate for a few minutes) and was sent to the ER. By the time I saw the doctor, I had been flat for some time, first on the floor at work, then in the ambulance, then in the ER bed. Therefore my vital signs looked all right. Although I reported to the ER doctor that I had issues with tachycardia and had just had a syncopal event, he didn’t even do orthostatic vital signs. He just looked at the monitor and said, “Well, your heart rate is 60.” It was. But when I sat up in bed, it was 120. None of this concerned anyone except me. I got a liter of lactated Ringer’s and was discharged. 

I can tell you that if I’d had a penis and also had exactly those symptoms, they would have been taken seriously. 

I have more to rant about but have to go to work…more later.

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