Migraine: All Kinds of Discrimination?
A recent opinion piece at the New York Times is creating a buzz about discrimination and, in particular, mental illness. And yes, migraine does come into the picture.
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The author, who writes about personal experiences, has bipolar disorder. Here’s an excerpt from the article:
It’s little wonder that many people with a serious mental illness don’t seek medical attention when they need it. As a result, many of us end up in emergency rooms — where doctors, confronted with an endless stream of drug addicts who come to their door looking for an easy fix — are often all too willing to equate mental illness with drug-seeking behavior and refuse to prescribe pain medication.
I should know: a few years ago I had a persistent migraine, and after weeks trying to get an appointment with any of the handful of headache specialists in New York City, I broke down and went to the E.R. My husband filled out paperwork and gave the nurse my list of drugs. The doctors finally agreed to give me something stronger than what my psychopharmacologist could prescribe for the pain and hooked me up to an IV.
I lay there for hours wearing sunglasses to block out the fluorescent light, waiting for the pain relievers to kick in. But the headache continued. “They gave you saline and electrolytes,” my psychopharmacologist said later. “Welcome to being bipolar.”
When I finally saw the specialist two weeks later (during which time my symptoms included numbness and muscle weakness), she accused me of being “a serious cocaine user” (I don’t touch the stuff) and of displaying symptoms of “la belle indifference,” a 19th-century term for a kind of hysteria in which the patient converts emotional symptoms into physical ones — i.e., it was all in my head.
Be sure to read the whole article here: When Doctors Discriminate
It made me think about just how many different kinds of discrimination there are. Have you experienced any of these?
- You’re over-reacting. I know, because you’re female.
- It’s just because you’re stressed. I know you’re stressed, because you have migraine. Which you have because you’re stressed.
- I know it seems worse than normal, but I’m sure it’s just another migraine. You get those, therefore it’s always going to be the same thing.
- It’s just a headache. Take two painkillers and stop bothering me.
- You have depression/bipolar disorder/etc. Therefore it’s all in your head. Just pull yourself together.
- You don’t have depression/bipolar disorder/etc. But everyone with migraine does. So you’re in denial.
Thankfully, most doctors aren’t that blunt. As a matter of fact, I believe that most doctors are actually doing a pretty good job with what they have, and they actually want to help you. So no, this is not an anti-doctor post.
However, sad to say, there are some doctors out there who are a little too quick to jump to conclusions (conclusions that may even be true some of the time), too quick to think they know more about a patient’s symptoms than the patient (an objective view is great, but patients can actually be pretty perceptive about what’s going on in their own bodies), and too quick to buy into stereotypes.
Do you feel like you’ve experienced discrimination? What kind? And what have you done about it? Let’s talk!
21 August 2013 @ 8:34 pm
Hard to imagine that experience could happen these days with all of the pharma companies pushing all manner of triptan medications. Sad.
21 August 2013 @ 9:11 pm
This is why I think it is so important to pay attention to how we discuss “alternative” and “interdisciplinary” treatment. YES, non-pharmacological interventions can help. But if they do not, the patient should not be blamed and an effective treatment – by the PATIENT’s standards- should be found.
21 August 2013 @ 11:18 pm
I’m becoming more acutely aware of discrimination as my migraines become worse & consume more of my life… it seems like its everywhere and even though there ADA is there to protect, the people who discriminate against me treat the ADA like its a joke b/c its just not enforced.
I wanted to go back to college so I went to the Office of Disability Services, & the gentleman there was extremely sympathetic & helpful. However, I had to see the Dean of the school in regards to something, and he made fun of me for having migraines and the migraines themselves. Um, hello, ADA?
At my now former job, I turned in my ADA paperwork from three different doctors (my PCP, my neurologist, & my optometrist) requesting nothing that would cause my employer “undue hardship” as required by law. The primary request being the bulbs in the lights above my desk be changed from fluorescent to incandescent. For eleven months, they ignored this request & treated me as badly as they possibly could, including denying me time off to see my neurologist to get medications refilled & verbally harassed & made fun of my condition until they just made up a reason to fire me… a reason for which they do not have the paperwork to back up if it were to be investigated.
Currently, I am dealing with discrimination from an organization for which I have volunteered for the past eight years… wait for the surprise… Girl Scouts… they have taken it upon themselves to decide that since I suffer from this disability, it now interferes with my ability to do the jobs for which I am volunteered to do, even though I have been doing those jobs for several years with this same disability. Also, their own national mission statement claims they do not discriminate based on disability.
Who knows what my friends think… I hope they believe me because I hate to be the flake I’ve become because I cancel on them all the time… “sorry, I have a migraine” or “sorry, I just don’t have the energy to go out today… yesterday was really rough for me…” I want my life back!!!!
Right now, my neurologist/migraine specialist has the actual headaches somewhat under control, meaning I’m no longer having daily migraine headaches at an 8+… my migraines have now gone silent & the worse symptom is the vertigo; I spend quite a bit of time (on bad days which are quite frequent, much to my dismay) grabbing onto whatever is nearby just to stay upright… along with the other normal migraine symptoms… I feel like I can’t win, can’t beat these things at this point.
I am seriously wearing down from fighting off all these attacks… please tell me I am not the only one who gets this crap from all different directions…
30 June 2016 @ 5:52 pm
You are not the only one. I’ve had migraines since I was six years old, and school was hell for me once they started. No one believed me, a lot of people dismissed it as ‘that time of the month’, and even my friends whom I was very close with admitted to thinking in was faking it for years, until two of them moved in with me and saw the vomiting, the endless hours of sobbing and begging for help from my bed, and heard what I’ve gone through from my parents since that ‘first attack’.
The only support I had was my parents and one doctor. After him, ever other doctor I’ve had, has treated me like a druggie or a fake, even when I told them I did not want to be a walking cocktail of medications. That I wanted to find the root of the problem.
The older I got, the more I was warned NOT to talk about my problem. Keep the migraines a secret, because I’d ‘never be considered for a job’, or would be completely bipassed for raises and benefits if they ever found out. Instead, I was told to ‘work through it’. As if that was an option with migraines that turn you into a sobbing mess over any light or sound.
I’ve been threatened with ‘Disciplinary actions’ because of the amount of days I missed, and had to fill out a FMLA form for them, to which the company made very difficult for me to file. My doctor at the time said they were rejecting me because he put down that my migraines were incurable. He literally had to word it as ‘Patient will have this condition until her death’.
But even after the paperwork was filed, this same company harassed me until I quit. They started piling more hours and responsibilities on me without training or warning, had the HR woman constantly harassing me over missed days or leaving early.
My migraines have gotten better now that I’m a stay at home mom (I’m due in 5 weeks), mostly due to avoiding my triggers; Light, heat, sound. But when I go back to the work force, I know the harassment is going to start over again.
MigraineProject
22 August 2013 @ 7:34 am
@migraine_blog Migraine: All Kinds of Discrimination? – A recent opinion piece at the New York Times is creating… http://t.co/VB2973E7r6
22 August 2013 @ 9:23 am
I’ve have experienced all those types of discrimination. It’s horrible, any stomach problems I have get blamed on coeliac, I have chronic migraines and no help. I’ve been getting shrugged off by the Doctor since I was 11, I almost 20 now. Everyday is a struggle through pain related depression, my mum is depressed through her own illness as well as mine. The Doctor tells us both its all in our head.
22 August 2013 @ 10:47 am
I’ve had the “because you’re female” thing, with bonus “because you’re overweight”. One doctor told me I didn’t need meds, I just needed to stop gorging and lose weight and all my health issues would be resolved. He was an eye doctor, tasked with ruling out a detached retina as the cause of the sparkly lights I was seeing. I was so stunned, I couldn’t respond. Got similar treatment from a doctor who studies sleep disorders, and he was so mean about it, I left the exam room in tears (and I’m not one to cry). Needless to say, a crying jag didn’t help my migraine.
I do need to lose about 50 pounds, and I gained about that much due to something I feel is related to my migraines, in which I would wake up at 4 a.m. feeling like I was starving. Took several doctors and many, many tests to figure out that yes, I was actually hungry. My body doesn’t shut down properly during sleep, so by 4 a.m., I’m starving. Got that mostly under control by having gummy fiber chewables on hand during the night, and I have lost some weight since starting Botox treatment. Being able to get up and move without a throbbing headache 24/7 makes a difference.
23 August 2013 @ 4:43 am
Oh, Chris, that’s just awful! I hate that those doctors said those awful things to you! I understand completely… my body will get its days & nights mixed up during a migraine b/c I’ll sleep during the day & be awake at night (like now, haha) so I’m hungry (now) & when its daytime, I’ll be completely passed out again so not eating. And when I get myself straightened out again as the migraine slowly goes away, I’m so drained I just don’t have the energy to go out & exercise, exercise, exercise & I’m sure you don’t either. Just know you aren’t alone & there are people out there who do understand… and hey, next time one of those stupid doctors says crap like that, don’t just take it, stand up to them & give them an education… you’ll feel better! 🙂
22 August 2013 @ 3:23 pm
I suffer from migraines also but the story I am going to tell about Drs. is actually separate from migraine. I have an internist as my primary care physician. I was giving her my history about how I get a strange chronic cough whenever I get a cold. I told her how my previous doctor tried antibiotics, allergy meds, and nothing worked. I had xrays etc. He finally threw his hands up and sent me to a pulmonologist. The pulmonologist gave me a few tests and said it was allergies and sent me on my way with antihistimines. Well, each time I get a cold the cough seems to be more persistent. My current doctor listened to this and I could tell she was only half listening and thinking “Yeah, yeah she’s exagerrating- its probably a little bronchitis”. Long story short I came down with a bad cold one November and I knew right away I was in trouble. I tried to get an appt. with my allergist ( I really don’t have allergies without a cold!!!) but couldn’t get in for 2 weeks. So I went to my primary care phys for help. She prescribed asthma meds, a vaprorizer- asked me to return if not better. Not better- she was astounded-she put me on steroids- nothing. Finally, she had nothing else to offer but to tell me to go back to the allergist and see if she could help me.– which she really couldn’t. It took 7.5 weeks of coughing before it finally played itself out. Have the doctors mystified and out of ideas.
24 August 2013 @ 3:54 am
Hey Elsie, I had that cough that wouldn’t go away one time… I have chronic sinusitis (sinus infections), but one time couldn’t shake the cough & after multiple doses of antibiotics & steroids (including a shot in the rear, ugh) my PCP finally gave me a narcotic cough syrup… worked like a dream. Just a thought to try… I ask him for it now whenever I get a rotten sinus infection & have gone through my bottle b/c it seems to clear me up faster… you may want to ask your PCP about it… it may want to be worth a shot. And there are several out there so you may have to try a few before you hit the right one b/c the first one my dr gave me did nothing but the 2nd one works. Hope that might help, Angel
Nikki_Albert
22 August 2013 @ 4:38 pm
In my long time of having invisible disabilities I have smacked up against doctor stigma and discrimination more… http://t.co/GhvJ6CkxUm
23 August 2013 @ 8:59 am
I find that most doctors only half listen and think they know more than they do. I explained to my ” new” primary physician that I have an usual condition. Whenever I get a cold I end up with a chronic cough that each time I get a cold gets more persistent and hard to get rid of. Told her I had been treated by my last physician, seen a pulmonologist, two allergists etc. She kind of listened but I could tell she was probably thinking I was exagerrating and what I had was a normal cough due to the cold. Well, november 2011 I got a wicked sore throat and came down with a cold. The cough started right away. I called the allergist but she couldn’t take me for 2 wks. So I called my primary care phys. and she did see me right away. I reminded her of my dilemma. She started me on oral allergy meds, astnma inhalant, gave me a script for a vaporizer. Said if i wasn’t better in a week come back. Wasnt better in a week. She was astounded at my persistent cough. She gave me prednisone. didn’t work. finally, she said she was at a loss and suggested I see the allergist. She wasn’t able to do much either. The best diagnosis I have I gotten has been off the internet– virus induced asthma- very difficult to treat and often lasts up to 8 wks. My cough lasted 7.5. Then, this last winter I had some vestibular issues which I think is connected to my migraines. I went to an ENT and had my inner ear cheked out. It was fine. But I brought up my cough problem when I get colds and he dismissed everything and said I should have come to him because it is due to a sinus infection!
24 August 2013 @ 3:59 am
Lisa, see above what I just wrote to Elsie about the cough b/c I have chronic sinusitis as well. But you have my sympathies in regards to the asthma… my mom has really bad asthma that sometimes cause her migraines. I’m sorry about that! 🙁 – Angel
26 August 2013 @ 12:43 pm
Yes! Our local ER has some wonderful, caring doctors and nurses! If you have a “real” problem. Migraines? Forget about it. I have had migraines for 45 years, a trip to the ER is ONLY after 2 days of unbearable pain (and usually vomiting), only to be made to wait 3-4 hours before being seen. Then I was actually told I had a “red flag” on my name. Red Flags were codes for “drug chaser”. And I was treated for dehydration due to excessive vomiting, offered fiorinal (lol) and sent home. Oh and Heaven Forbid, you know any names of drugs that help, and those that don’t (like fiorinal). That just makes you a knowledgeable drug chaser.
I told my Primary Care about this and he suggested I call him first before going to the ER. I did this, and he told me to stop by his office and he would give me a RX to take to the ER with me, and he would also call ahead so they would be ready. I thought Finally!
Upon arrival, I waited 3 hours only to be told “We don’t let some other Dr tell us what to do.” Needless to say, the migraine wasn’t treated properly.
Its been years since I’ve gone to the ER for migraines, thanks mainly to a fantastic neurologist I was lucky enough to find. She has also managed to get me accepted into the Botox Program. Had my first injections 2 weeks ago! So excited and hopeful!
I also suffer from RA, and have had to go to the ER for extreme flare ups (by ambulance), but I’m still a drug chaser and I guess unless I am bleeding, to them I always will be.
There are good, caring, and knowledgeable Drs out there, it’s just a crazy long hard search finding them.
27 October 2013 @ 4:17 pm
I have been pushed out on my gurney and left in the hallway for hours. I have been called a drug seeker. I have been told I was being put on a Federal list that says that I visit ERs too often for non emergencies and Migraines are considered non emergencies. (That particular visit indicated I had low sodium of 117, a critical level, and I was hospitalized at a different hospital because the hospital that had sent the social worker to put me on the federal list did not think anything was wrong with me except for a migraine) I have been yelled at by Drs for getting late night calls from the ER drs regarding my care. Once, when I was frustrated that a Dr would not consider that I had nothing else wrong with me except Classical Migraine (such as Occipital Neuralgia) and would only give me Keppra (which was giving me terrible nausea) told me “this should be fun” when I said I made a list of things I thought I might have and when I suggested I seek out a hospital to stay at to try and find out what was wrong with me, she said I would have to go out East, spend $10,000, I would get better, then she stopped, pointed at my husband and said, “and you, you are the husband. She would get all better and then come home to you and it would start all over again.) This was a highly respected, research Dr, who now works at Harvard. So yes, I definitely believe we are discriminated against.