January 5, 2005
Lupus often feels like it is me against them
Author: Karyn Moran Holton
Published on: March 1, 2000
DISCLAIMER: This article is very gender-biased, due to the fact that the majority of lupus patients are female. I apologize to the male lupus patients who are reading this, and I plan on writing an article in the future which specifically addresses the issues of male lupus patients, but for this month, you guys may want to skip over to the Sports Section! ;-) Let's face it--For a very long time, the medical establishment was run by men, for men, and with men in mind as "the average patient". Now the enormous wall has been breached, women are as likely to be doctors as men are to be nurses. It should be very easy then to get a male doctor to understand how a woman's body works, what can go wrong with it, and how an illness might affect her, right?
BZZZZZZ! Oh sorry! You missed the $64,000 question!
It is almost impossible to get an accurate diagnosis of lupus from the first doctor one sees, never mind on the first visit! Most women don't go to the doctor with a specific complaint until the problem becomes severe enough to interfere with their daily activities. The reasons for this may be due to the demands of a hectic schedule, the old habit of the woman being the caretaker and not the one who needs help, or the simple, old, and completely wrong belief that "It's just one of those things!"
It is not needful that women "learn to deal with" chronic pain, fatigue, hair loss and the other "vague" symptoms that lupus can present with, but sadly, we are often told this by our health care providers. Symptoms that can range from annoying to severly impairing can be dismissed easily with a "Well, that's what happens as we get older, isn't it?"
Many times, we don't even have the time to discuss our symptoms with our physicians, largely due to HMOs and insurance companies' interference with doctors. Doctors can be told they have a minimum quota of patients, or even have a limit on the minutes that they are expected to spend with each patient. This leads to cursory examinations, and almost no time for discussion between patient and physician.
However, speaking up for our rights can be more detrimental than taking this kind of neglect. Often, patients who have a list of symptoms to talk to the doctor about (and insist on discussing them all with the doctor), who don't allow themselves to be rushed, and who ask questions and offer opinions about their healthcare often get labeled "professional patients" and are not taken seriously by the health care team.
Worse can be the patient who not only insists on quality care, but suffers from chronic pain. It is frequently difficult to pinpoint a specific reason for lupus pain, due to the general inflammation that the disease causes. Patients who complain of non-specific severe pain are frequently labeled narcotic abusers, and get (shall we put it politely?) a less-than-sympathetic response.
It doesn't have to be this way.
There are several things that we as patients can do to ensure that we get the high-quality health care that we not only need, but deserve!
* Get informed, stay informed!
In order for you to make sure that your health care team knows all about your lupus, first you have to know all about your lupus! Get the facts! There is a lot of information on the Internet, you can get information from your local chapter of the LFA, go to the library and get the latest from medical magazines like JAMA and The Lancet, invest in a PDR or drug reference book, so you'll know what to expect from any new drugs. Knowledge is power--Use it!
* Talk to your physicians
Your physicians can't help you if they don't know what's going on with you. If you find that there's no time during your exams for discussion, schedule an appointment just for a conference. Let the receptionist know that you'll need at least 15-30 minutes of uninterrupted time with the doctor for this purpose. Bring a list of your concerns: questions, issues, signs and symptoms that you've noticed, things you absolutely must have, things you absolutely never want, treatment options you've heard of, anything at all that you want to let your physician know. This includes letting him/her know that you feel that you are not being listened to or taken seriously. Sometimes doctors get so preoccupied that they literally have no idea how they're coming across.
When discussing your symptoms, try to be as specific as possible. If you need to, keep a daily journal at home of how you feel each day, and anything you notice that is new. Bring this journal to the doctor with you. This can be especially helpful if you suffer from "Lupus Fog" and sometimes have difficulty remembering things.
* Get in touch with other Lupus patients
Aside from the obvious relief of talking with people who really understand how you feel because they're in the same situation, other lupus patients can be an untold wealth of information. Utilize their experience! Ask them if they've dealt with unsympathetic doctors, what worked, what didn't, etc. You might even be able to offer your expert advice on how to deal with this particular problem!
* Keep a current medical record with you
Each time you see one of your docs, get a copy of your medical record. Do this for each doc--PCP, rheumie, nerologist, nephrologist--everyone. Get copies of X-rays, lab tests, MRIs, or any other tests you have done. This lets you have all the info at your fingertips, and there can be no question of miscommunication. Your doc's office may charge a nominal copy fee per sheet of paper, but it's an investment in your health that I think might be worth it!
Keeping your own records is also useful when seeing a new doc--You don't have to deal with the all-too-common "Oh, we didn't get your chart--Please fill out this medical history quiz!" Think of it as a resume for your health!
* Don't let the pain do the talking for you!
It is very easy to let the pain and frustration of lupus take over and dominate our lives. In the war with the wolf, one of the battles is not letting ourselves become bitter and angry with the world.
Let's face it: People who don't have lupus will never understand how we feel. It's part of our responsibility to try to let them know how we feel in a way that won't alienate them and cut off our sources of help. Sometimes that means not saying "No you idiot! I didn't say it 'only hurts' in the morning! I said it's worse in the morning! It hurts all the time, and I want my @$%!%# pain meds now!" and simply taking a deep breath and saying, "No, I said, 'It's worse in the morning,' but the pain is constant. It's about a 6 on a 1-10 scale right now," and then pummelling the dickens out of a pillow after the yahoo leaves the room! :-)
* Raise Lupus Awareness!!
Be honest: How many times before you were diagnosed did you hear the word "lupus"? Unless you're a health care professional, or know someone personally with it, I'll bet it wasn't a lot! People need to be made aware of lupus and the effects it has on our bodies, our families and friends, and our lives. It's very easy for people to look at us and not take lupus seriously because of simple ignorance. Help spread awareness! Fund research, volunteer your time with lupus awareness groups, start support groups (on the internet if you have to!), and let people know that we're here, and we're fighting for our lives!
It's not always easy getting the care that you need. It's not always easy getting the respect that you deserve. Don't be afraid to say, "I don't like the care I'm getting--I don't think that it's helping me!" Get second opinions, ask questions, and don't be afraid of your doctors. After all, they work for you, don't they? :-)
Anyhow-keep asking keep going and keep perservering-some day you will get answers but only if you stick with it!!! Do not let anyone convince you it is all in your head or worse believe it yourself-your symptoms are very real and require prompt medical intervention. Change doctors, or whatever is necessary to get treated with the respect you deserve. You are your own best advocate!
Posted by Lisa on January 5, 2005 6:15 PM