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adrian_turtleElise had a stroke a few days ago.* She managed to communicate enough of the problem that the person with her (sensitized by having one dear friend recovering from a stroke, and another working in emergency medicine) recognized the emergency and called 911. This was all despite Elise's initial desire to lie down and hope the symptoms went away. Thanks to prompt treatment, the stroke did not do permanent damage.
Elise, and the many people who care about her, bounced from profound terror to profound relief. In the first day or so after the stroke, I saw several people posting the news that she was in the hospital, and there was a tremendous outpouring of sympathy and offers to help. From over here, it looked like caring for Elise, caring for the community she helps build, and an attempt to fight back against disease and feeling helpless. Now that Elise is back from the hospital, and her stroke is no longer a medical problem, the community is redirecting the desire to help. I understand why so many people are talking about the importance of calling emergency medical services at the first sign of stroke symptoms. I even understand why the conversation has such emotional intensity--all that energy from fear and relief and the sudden transition has to go somewhere.
It's still making me uncomfortable.
Stroke symptoms are disturbingly like migraine symptoms. Severe headache, numbness on one side of the face, loss of coordination, trouble seeing. I stopped going to the ER for any of that** almost 10 years ago, because I couldn't deal with how contemptuous and dismissive they were about it. Panic attacks, sleep disorders, and MS can also do unpleasant things to a person's balance and coordination, and sometimes to vision. Not to mention side effects from medications.
I am very uncomfortable about words like "damned fool" for those who hesitate to seek treatment. I suspect that if a woman reaches 40 without doctors being dismissive about what she says about her symptoms, she has been very lucky (in her health or her doctors, or perhaps both.) Having a disorder that's difficult to diagnose or treat makes it harder. Being fat, or depressed, or having a disability, makes it even harder to find doctors who won't discount what a person has to say. It makes it harder to call a random bunch of medical people and ask for emergency help when the only problem is how awful you FEEL. Learning from personal experience is hardly foolish. Often, the difference between going to the ER and lying down and hoping the symptoms will go away is having somebody there to be your advocate with the hospital.
I am uncomfortable with the way money is invisible in the conversation. This crisis didn't happen in London or Montreal, after all. A lot of Americans are talking about calling 911 right away as an indicator of compassion, character, and responsibility. There's part of the American national conversation about health care, that blames unnecessary use of emergency services and diagnostic testing for the overall high cost of care. It's really loud and it's been going on for years, and I can't entirely ignore it even though I recognize it as flawed. It makes it hard to believe a good person*** is defined by always calling for an ambulance in the face of frightening symptoms, without first asking themselves if it's likely to be a false alarm.
I have very good medical insurance. (It would not be available to me at all, without the recent MA laws requiring universal coverage. And there's no way I could afford it myself. My mother is paying the premiums for me, for which I am deeply grateful.) The individual plan has a $1000 deductible for ER services. An option with less expensive premiums would have a $2000 deductible. Gambling a couple of months rent changes how a person thinks about a question like, "Is it serious and treatable? Or is this just a false alarm?"
This doesn't just happen with symptoms of possible stroke. It also turns up with heart attacks. Women my age are supposed to treat fatigue and pain in the neck and left shoulder as an emergency. Yeah, right. My left shoulder has hurt for years. It may be theoretically possible to distinguish flare-ups in the chronic pain (which shoot from elbow to neck, and are exhausting, and send my blood pressure up) from heart attack symptoms. I have no idea how, and I don't intend to call 911 for every pain flare.
Last year I overheard a woman in a coffee shop talking about a woman having a complicated miscarriage, who had not gone to the ER when she started having pain and nausea. "How could she be so stupid? She should have known something was wrong!" I'd like to think it was just an irrational outburst in a moment of distress, meaning no more than, "I wish this hadn't happened! Somebody should have stopped it!" But it's not stupid for a pregnant woman to expect she will have to put up with some pain and nausea, and have no idea how bad it's supposed to be. It's really hard to talk about pain tolerances, and when you can call for help without being a wimp. Condemning those who get it wrong bothers me, and seems like it would be generally unhelpful.
* That's the specific crisis that means I'm writing this post today, after stalling on it for months, perhaps years.
** The ER trip in 2002 was specifically because the the combination of visual distortion and listed side effect on one of my meds had me terrified about rapid-onset glaucoma.
*** The most common phrasing seems to be that a "compassionate" person would call at once. The equation of fear and shame with lack of compassion is pushing my victim-blaming buttons something fierce.
Elise, and the many people who care about her, bounced from profound terror to profound relief. In the first day or so after the stroke, I saw several people posting the news that she was in the hospital, and there was a tremendous outpouring of sympathy and offers to help. From over here, it looked like caring for Elise, caring for the community she helps build, and an attempt to fight back against disease and feeling helpless. Now that Elise is back from the hospital, and her stroke is no longer a medical problem, the community is redirecting the desire to help. I understand why so many people are talking about the importance of calling emergency medical services at the first sign of stroke symptoms. I even understand why the conversation has such emotional intensity--all that energy from fear and relief and the sudden transition has to go somewhere.
It's still making me uncomfortable.
Stroke symptoms are disturbingly like migraine symptoms. Severe headache, numbness on one side of the face, loss of coordination, trouble seeing. I stopped going to the ER for any of that** almost 10 years ago, because I couldn't deal with how contemptuous and dismissive they were about it. Panic attacks, sleep disorders, and MS can also do unpleasant things to a person's balance and coordination, and sometimes to vision. Not to mention side effects from medications.
I am very uncomfortable about words like "damned fool" for those who hesitate to seek treatment. I suspect that if a woman reaches 40 without doctors being dismissive about what she says about her symptoms, she has been very lucky (in her health or her doctors, or perhaps both.) Having a disorder that's difficult to diagnose or treat makes it harder. Being fat, or depressed, or having a disability, makes it even harder to find doctors who won't discount what a person has to say. It makes it harder to call a random bunch of medical people and ask for emergency help when the only problem is how awful you FEEL. Learning from personal experience is hardly foolish. Often, the difference between going to the ER and lying down and hoping the symptoms will go away is having somebody there to be your advocate with the hospital.
I am uncomfortable with the way money is invisible in the conversation. This crisis didn't happen in London or Montreal, after all. A lot of Americans are talking about calling 911 right away as an indicator of compassion, character, and responsibility. There's part of the American national conversation about health care, that blames unnecessary use of emergency services and diagnostic testing for the overall high cost of care. It's really loud and it's been going on for years, and I can't entirely ignore it even though I recognize it as flawed. It makes it hard to believe a good person*** is defined by always calling for an ambulance in the face of frightening symptoms, without first asking themselves if it's likely to be a false alarm.
I have very good medical insurance. (It would not be available to me at all, without the recent MA laws requiring universal coverage. And there's no way I could afford it myself. My mother is paying the premiums for me, for which I am deeply grateful.) The individual plan has a $1000 deductible for ER services. An option with less expensive premiums would have a $2000 deductible. Gambling a couple of months rent changes how a person thinks about a question like, "Is it serious and treatable? Or is this just a false alarm?"
This doesn't just happen with symptoms of possible stroke. It also turns up with heart attacks. Women my age are supposed to treat fatigue and pain in the neck and left shoulder as an emergency. Yeah, right. My left shoulder has hurt for years. It may be theoretically possible to distinguish flare-ups in the chronic pain (which shoot from elbow to neck, and are exhausting, and send my blood pressure up) from heart attack symptoms. I have no idea how, and I don't intend to call 911 for every pain flare.
Last year I overheard a woman in a coffee shop talking about a woman having a complicated miscarriage, who had not gone to the ER when she started having pain and nausea. "How could she be so stupid? She should have known something was wrong!" I'd like to think it was just an irrational outburst in a moment of distress, meaning no more than, "I wish this hadn't happened! Somebody should have stopped it!" But it's not stupid for a pregnant woman to expect she will have to put up with some pain and nausea, and have no idea how bad it's supposed to be. It's really hard to talk about pain tolerances, and when you can call for help without being a wimp. Condemning those who get it wrong bothers me, and seems like it would be generally unhelpful.
* That's the specific crisis that means I'm writing this post today, after stalling on it for months, perhaps years.
** The ER trip in 2002 was specifically because the the combination of visual distortion and listed side effect on one of my meds had me terrified about rapid-onset glaucoma.
*** The most common phrasing seems to be that a "compassionate" person would call at once. The equation of fear and shame with lack of compassion is pushing my victim-blaming buttons something fierce.
no subject
Date: 2011-01-09 09:56 pm (UTC)I want to add that one of the symptoms of stroke is confusion. Not all of us have clear-thinking friends and loved ones standing by to help.
Yeah, victim-blaming, and the related belief that bad outcomes "should" always be preventable (because we all "should" have the complete information and resources to prevent them, of course).
no subject
Date: 2011-01-09 11:17 pm (UTC)I want to add that one of the symptoms of stroke is confusion.
Oh, that's a very good point! So many problems (like hypothermia or dehydration) start to get dangerously bad just as a person becomes less able to perceive just how bad it is.
I really understand the wishful thinking that bad outcomes should always be preventable, and we all should have the complete information and resources to prevent them. (And a hypoallergenic pony.)
no subject
Date: 2011-01-09 09:58 pm (UTC)no subject
Date: 2011-01-09 11:03 pm (UTC)no subject
Date: 2011-01-10 12:44 am (UTC)Still, if one gets a migraine a week or even a migraine a month, it's usual. One takes the appropriate steps to fend it off and waits for them to be effective.
no subject
Date: 2011-01-10 02:55 am (UTC)no subject
Date: 2011-01-10 05:03 pm (UTC)no subject
Date: 2011-01-10 05:44 pm (UTC)no subject
Date: 2011-01-11 01:57 am (UTC)Aiiie! I don't even have a name for this internalized *-ism, but it sure is insidious.
no subject
Date: 2011-01-10 03:49 am (UTC)Even people with advocates don't have advocates by their side 24/7.
no subject
Date: 2011-01-10 05:42 pm (UTC)Good point. I've also found that the qualities that make someone a powerful advocate are not necessarily those that make a close friend or intimate partner.
Sometimes it seems like the most effective advocate I've ever had in medical situations was my mother. Some of that was probably because doctors regard a child with staggering headaches differently than they regard a woman with a long history of headaches. But my mother was also more effective than her siblings at advocating for her parents' medical care. It can be useful to be that pushy, sometimes. But it's not easy to live with.
Looking in the other direction, I love a man who is generally thought to have a forceful personality. (Darkrosetiger is smirking. I can see it from here.) He plays competitive games and purely hates to lose any of them. He went to law school, and liked it, and they're supposed to teach something about advocacy there. And yet...put him in the room with a medical authority, and he caves completely. He can't bring himself to push back against medical authority. If he wasn't living with a skeptical person who could look after him, it would be very worrying.