OK this is going to be a long rant. I'm mad.
I am a regular contributor on Allexperts.com, where people can write in about, well, anything, and ask an expert their question. I signed up as an expert in lupus. From the angle of living with it for 20 years and trying everything under the sun to deal with it. And some of it working quite well. But that's another post and not part of this rant.
What saddens me is the question I get the most often. It's not "I have lupus- now what?" or "Is there anything I change in my lifestyle to help reduce my need for medication? or "How do I keep my spirits up?" or "Hey Carla why are you so awesome?".... No, the question I get the most often (in various iterations) is... (have you guessed yet?)- "Why doesn't my doctor want to diagnose me with lupus?"
Now at the risk of sounding like a "back in my day" story... Back in my day, if you had a positive ANA test and 4 of the 11 classic lupus symptoms (see list here http://tinyurl.com/3lwpa78 ), you got diagnosed with lupus. Of course this was after 2-5 years of schlepping around to various doctors being misdiagnosed before anyone even thought to look for lupus. But once they started looking for it, now all you had to do to qualify to join the fabulous club of lupies was have 4 symptoms and a positive ANA.
Not anymore. I guess the lupus club has too many members now, much like how academia has too many PhDs. Now they have to figure out a way to weed out candidates and discourage them (raise the minimum SAT score, take fewer candidates, jack up tuition, act like an ass so they don't want to stick around...). All in hopes that they either give up and go away (gee, also reminds me of applying for disability) or it takes them so long to finish their degree that you're already retired when they graduate.
Maybe the CDC has put a cap on how many new lupus cases are allowed a year, lest we have an epidemic reported (never mind that we have an actual epidemic- just don't let it show up on paper!). Maybe doctors have been watching too many episodes of House "it's never lupus" MD and have started to believe it really isn't ever lupus. All I know is if you want a lupus diagnosis in 2011, you're in for an uphill battle. Oh yeah, on top of your uphill health battle. Because being sick is apparently not enough to have to deal with. Now you have to diagnose yourself then build a case and convince them to give you the diagnosis you went and figured out for yourself. And then pay them for the privilege.
I suppose one reason I was ultimately diagnosed with lupus, and very definitively, and despite the fact that I am also positive for Sjogren's, was that I had 10 of the 11 classic lupus symptoms, plus all 4 "bonus" symptoms. (here's the list again: http://tinyurl.com/3lwpa78 )
I wish that story weren't so common. It's terrible how people suffer because they aren't listened to carefully enough.
20 years ago, when I got sick, not enough doctors would think to even look for lupus. Now it seems like they've all heard of it, but all they've heard is "it's never lupus- call it something else." I would love to get to the bottom of this trend. Why are they so resistant to giving a lupus diagnosis? Someone please tell me. I'm sure the answer will enrage me (even further), but I want to know.
It still happens even after getting diagnosed- they want to un-diagnose you! I've been living with this for 20 years and still every time I see a new doctor, they don't believe that I have lupus- even when I bring them my 10 pounds' worth of old medical records. They run all the tests all over again. Seriously, they look at me accusing and and say "Who told you you had lupus?" I'm like, "You want the list alphabetically or chronologically?"
Why would I lie about such an annoying and socially disrespected disease? If I picked a disease I'd pick something that's not a punchline. But they have to run their tests and then march back in the next day and announce to me that I have lupus. Wow, how *ever* did you figure that out, you mad genius?
The current favorite substitute for a lupus diagnosis that I hear over and over from patients writing to me on Allexperts.com is Sjogrens. (and sometimes "Mixed Connective Tissue Disease").
Being diagnosed with Sjogren's does NOT mean you don't have lupus. You can absolutely have both. I have Sjogren's and Lupus- and also Raynaud's. All 3 are autoimmune. It's very common to have more than one autoimmune disorder. Some say I have "secondary Sjogren's" - meaning the lupus is the primary disease. I would agree with that, but whatever.
Let's break it down and cross-reference the symptoms lists. There is some overlap. Short break from rant while we insert lists.
Sjogren's syndrome symptoms include:
If you have any of these in this second list, definitely be sure to mention them to your pill pusher. I mean doctor.
A few things to consider asking for:
Lastly, try not to be confrontational with the doctor. If you push, they usually push back. Try using language like "I'm concerned" "Can you help me figure out" and "do you think...?" We want a spirit of cooperation (not submission, cooperation) and so try to use that kind of cooperative language, even though you must be frustrated. Take a deep breath, and
And if you are a praying person, that doesn't hurt either.
My best wishes to those who are struggling for a proper diagnosis-
Carla
Carla Ulbrich, The Singing Patient
_____________
www.thesingingpatient.com
www.bestpossibleme.com - health coaching
www.youtube.com/user/carlaulbrich - funny songs
"I am reading Carla's book How Can You NOT Laugh at a Time Like This? and loving it. I LOVE Carla's songwriting, so I'm not surprised that her prose writing is as smart, funny, and insightful as her music." - Christine Lavin
get the book here: http://tinyurl.com/348hroc
I am a regular contributor on Allexperts.com, where people can write in about, well, anything, and ask an expert their question. I signed up as an expert in lupus. From the angle of living with it for 20 years and trying everything under the sun to deal with it. And some of it working quite well. But that's another post and not part of this rant.
What saddens me is the question I get the most often. It's not "I have lupus- now what?" or "Is there anything I change in my lifestyle to help reduce my need for medication? or "How do I keep my spirits up?" or "Hey Carla why are you so awesome?".... No, the question I get the most often (in various iterations) is... (have you guessed yet?)- "Why doesn't my doctor want to diagnose me with lupus?"
Now at the risk of sounding like a "back in my day" story... Back in my day, if you had a positive ANA test and 4 of the 11 classic lupus symptoms (see list here http://tinyurl.com/3lwpa78 ), you got diagnosed with lupus. Of course this was after 2-5 years of schlepping around to various doctors being misdiagnosed before anyone even thought to look for lupus. But once they started looking for it, now all you had to do to qualify to join the fabulous club of lupies was have 4 symptoms and a positive ANA.
Not anymore. I guess the lupus club has too many members now, much like how academia has too many PhDs. Now they have to figure out a way to weed out candidates and discourage them (raise the minimum SAT score, take fewer candidates, jack up tuition, act like an ass so they don't want to stick around...). All in hopes that they either give up and go away (gee, also reminds me of applying for disability) or it takes them so long to finish their degree that you're already retired when they graduate.
Maybe the CDC has put a cap on how many new lupus cases are allowed a year, lest we have an epidemic reported (never mind that we have an actual epidemic- just don't let it show up on paper!). Maybe doctors have been watching too many episodes of House "it's never lupus" MD and have started to believe it really isn't ever lupus. All I know is if you want a lupus diagnosis in 2011, you're in for an uphill battle. Oh yeah, on top of your uphill health battle. Because being sick is apparently not enough to have to deal with. Now you have to diagnose yourself then build a case and convince them to give you the diagnosis you went and figured out for yourself. And then pay them for the privilege.
I suppose one reason I was ultimately diagnosed with lupus, and very definitively, and despite the fact that I am also positive for Sjogren's, was that I had 10 of the 11 classic lupus symptoms, plus all 4 "bonus" symptoms. (here's the list again: http://tinyurl.com/3lwpa78 )
I wish that story weren't so common. It's terrible how people suffer because they aren't listened to carefully enough.
20 years ago, when I got sick, not enough doctors would think to even look for lupus. Now it seems like they've all heard of it, but all they've heard is "it's never lupus- call it something else." I would love to get to the bottom of this trend. Why are they so resistant to giving a lupus diagnosis? Someone please tell me. I'm sure the answer will enrage me (even further), but I want to know.
It still happens even after getting diagnosed- they want to un-diagnose you! I've been living with this for 20 years and still every time I see a new doctor, they don't believe that I have lupus- even when I bring them my 10 pounds' worth of old medical records. They run all the tests all over again. Seriously, they look at me accusing and and say "Who told you you had lupus?" I'm like, "You want the list alphabetically or chronologically?"
Why would I lie about such an annoying and socially disrespected disease? If I picked a disease I'd pick something that's not a punchline. But they have to run their tests and then march back in the next day and announce to me that I have lupus. Wow, how *ever* did you figure that out, you mad genius?
The current favorite substitute for a lupus diagnosis that I hear over and over from patients writing to me on Allexperts.com is Sjogrens. (and sometimes "Mixed Connective Tissue Disease").
Being diagnosed with Sjogren's does NOT mean you don't have lupus. You can absolutely have both. I have Sjogren's and Lupus- and also Raynaud's. All 3 are autoimmune. It's very common to have more than one autoimmune disorder. Some say I have "secondary Sjogren's" - meaning the lupus is the primary disease. I would agree with that, but whatever.
Let's break it down and cross-reference the symptoms lists. There is some overlap. Short break from rant while we insert lists.
Sjogren's syndrome symptoms include:
- dry eyes
- dry mouth
- joint pain or inflammation (arthritis)
- Raynaud's phenomenon
- lung inflammation
- lymph node enlargement
- kidney, nerve, and muscle disease
- Raynaud’s phenomenon
- joint pain/ inflammation
- lung inflammation of the lining around the lungs (pleuritis)
- Kidney disorder – persistent protein or cellular casts in the urine
- Neurological (nerve) disorder – seizures or psychosis
lupus symptoms which do NOT overlap with Sjogrens:
- Fever (over 100° F)
- Extreme fatigue
- Hair loss
- Inflammation of heart lining
- Malar rash – a rash over the cheeks and nose, often in the shape of a butterfly
- Discoid rash – a rash that appears as red, raised, disk-shaped patches
- Photosensitivity – a reaction to sun or light that causes a skin rash to appear or get worse
- Oral ulcers – sores appearing in the mouth
- Blood disorder – anemia (low red blood cell count), leukopenia (low white blood cell count), lymphopenia (low level of specific white blood cells), or thrombocytopenia (low platelet count)
- Immunologic disorder – abnormal anti-double-stranded DNA or anti-Sm, positive antiphospholipid antibodies
- Abnormal antinuclear antibody (ANA)
If you have any of these in this second list, definitely be sure to mention them to your pill pusher. I mean doctor.
A few things to consider asking for:
- kidney function tests. Sjogren's or lupus can affect kidneys.
- a second opinion. On that visit, I suggest you bring a list of all your symptoms so you don't forget to mention anything. I would put a star next to any symptom on your list that cannot be explained by Sjogren's. If that doctor also insists you only have Sjogren's and not lupus, ask him to please explain what he thinks is causing your non-Sjogren's symptoms- especially if you have rashes, hair loss, anemia, fever (and of course your positive ANA test).
- consider bringing a trusted friend to your appointment with you. Doctors are used to that.
End of rant, and a few reasonable parting words:
Lastly, try not to be confrontational with the doctor. If you push, they usually push back. Try using language like "I'm concerned" "Can you help me figure out" and "do you think...?" We want a spirit of cooperation (not submission, cooperation) and so try to use that kind of cooperative language, even though you must be frustrated. Take a deep breath, and
And if you are a praying person, that doesn't hurt either.
My best wishes to those who are struggling for a proper diagnosis-
And one last thing... %$#*&*#*!!
Carla
Carla Ulbrich, The Singing Patient
_____________
www.thesingingpatient.com
www.bestpossibleme.com - health coaching
www.youtube.com/user/carlaulbrich - funny songs
"I am reading Carla's book How Can You NOT Laugh at a Time Like This? and loving it. I LOVE Carla's songwriting, so I'm not surprised that her prose writing is as smart, funny, and insightful as her music." - Christine Lavin
get the book here: http://tinyurl.com/348hroc
6 comments:
I get "who told you you were bi-polar" all the time. They don't believe it as the classic meds don't work for me and I handle it with sleep meds and a low stress life style (when I can manage that) I explain to them that I get hypomania and not so much depressed. (Really there's no other diagnosis for that) Lupus never fit me, but this Sjogrens fit's me better. I'd never know about it but for you.
Carla ~ Thank you for a great post! I do want to mention that extreme fatigue and photosensitivity are considered symptoms related to just Sjogren's. The fatigue has been known for a while and recently there has been mention in the literature of Sjogren's patients having photosensitivity as well. That being said, I also think it is reasonable to conclude that the photosensitivity MAY be because many of these patients diagnoses with Sjogren's MAY also be undiagnosed lupus patients.
I have two close friends with lupus and I have Sjogren's (lupus has been suspected but currently not a diagnosis) and I completely agree with you about doctors doing a very poor job of validating the diagnosis. I think that doctors oftentimes feel that as chronically ill patients searching for a diagnosis, we often "fall back" on lupus to explain out autoimmune symptoms. Personally, I feel that we actually have more people with lupus because of different environmental factors and especially because of nurtrition/lifestyle habits which may trigger autoimmune symptoms but that is a topic for another time! I also think that there is more awareness and in the age of the internet, patients are becoming more informed and educated. We have to be because doctors are spending less and less time with us. Just my thoughts....
I misread one sentence as "If you are a PAYING person." Since you are paying* for the service, you really ought to be getting the service--and that's true for everything, not just medical services.
*If taxpayers are paying for your medical care, well, I'm the taxpayer. Speaking as the representative of that class, I WANT you to get the service I'm paying for. So it doesn't make any difference.
I have a hard time understanding this. I was very fortunate that I had a fabulous group of doctors working with me (and now my children - hence my other comment about heredity). I was lucky in the sense that my symptoms were very sever and my kidneys were in stage 4 nephritis, so that one was easy to diagnose. Then my rhumatologist was convinced that I also have SLE but my ANA was never coming back elevated enough so she had me come in every week for bloodwork until the test was positive and I could be diagnosed.
Now my 17 year old son has been diagnised with Raynaud's Syndrome - my almost worst nightmare. But since all of our doctors are in what I like to call the Medical Mall, they all know and talk to each other about what is going on in my family.
My aunt on the otherhand, has had symptoms for as long as I can remember, and at 55 she finally has a diagnosis of lupus (I of course have been recommending my doctor for years). Like the disease itself, how it is treated seems to be the luck of the draw.
Love your blog - it is so important to be able to deal with this disease with a smile on your face - you certainly do assist with that, thanks!
Could you use a different font? Your blog is very hard to read. Thanks!!
just changed it. thanks for your input. let me know if it is still hard to read.
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