Living with Lupus: About 40 percent of people who were originally diagnosed with cutaneous lupus, which affects only the skin, will go on to develop systemic lupus that can affect any organ in the body.
Has cutaneous lupus become more than skin deep?
One of the most difficult things for a patient diagnosed with cutaneous lupus to accept is, if they have other health complaints that they feel are due to systemic disease, and their doctor does not agree. Over the years in my connections with the Lupus Foundation of America, my participation in lupus online discussion groups and support groups, and from blogging comments and emails I receive, I have met a number of cutaneous lupus patients in this situation.
Some cutaneous lupus patients think they may have systemic lupus, but feel their doctor is discounting their reports of other complaints and symptoms. As a result, some have become increasingly discontented with their treatment and some even grow bitter toward their health care providers. This mindset does not seem to help them get anywhere with their doctors, at all!
Advice to fellow lupus patients…
When a patient has a cutaneous lupus diagnosis, the statistics and common sense cannot help but make them wonder if their disease could be more severe, or if over time, it will progress into systemic lupus. It is natural and somewhat founded to have some apprehension or even fear of lupus worsening. My advice to these fellow patients for coping with this aspect of lupus is always pretty much the same.
- Develop and keep a positive, non-whining relationship with your doctor! They are just people, but they are the door you must go through to get correct diagnosis and treatment. They are not perfect people, nor do they have perfect medical skills and instincts. The practice of medicine is an intellectual art, not just science, and there is no perfect formula to use to reach an accurate diagnosis.
- Be patient and use your best people skills with your doctor. The rules of human nature and interpersonal communication still apply to the doctor-patient relationship. Respect that, and treat your doctor like a V.I.P. because for a lupus patient, he or she.is one!
- Communicate proactively and positively with your doctor. If you have one who will not engage in two-way discourse with you, find a new doctor!
- Keep a log with basic information about major symptoms and write an outline of things between appointments that you want your doctor to know about.
- Talk to your doctor about how frequent, how long-lasting or how severe the significant health events have been.
Getting the office visit off on the right foot
Working along side high level professionals and lawyers throughout my three decade career in law offices has taught me something very important that also applies to interacting with this type of professional in the medical field. The doctor is an executive, so they want to hear what in business circles is referred to as an “executive summary.” Start your conversation with your doctor with two or three main highest priority pieces of information, ask a couple of important brief questions, and then express your most important specific key concern. Get right to the point, right up front.
Your first few sentences in the conversation is where the doctor will focus mentally throughout the entire office visit. Set the tone and theme of the visit by getting your most important information out in the beginning, clearly, concisely and succinctly. It is important not to wait until the end of your visit to bring up the most important thing that concerns you in a “by the way, what about this…” comment as the doctor is ready to leave the room. By that time, the doctor is mentally done and ready to disengage and move on to the next patient. He or she has already taken in all the facts, mulled them over for a while, and then formed mental conclusions. An updated diagnosis has been made, tests have been ordered and prescriptions have been written. Don’t wait until the end to bring up the real reason you made the appointment.
If, as a patient with a cutaneous lupus diagnosis, you think you may have signs of systemic lupus, start out with that conversation. Be prepared to discuss specific symptoms you have, while not trying to tell your doctor what you think your diagnosis should be. Remember, the doctor sees the diagnosis as his or her job, not yours! He or she will base their diagnosis on things they can observe in the office visit, things you tell them, and information that lab and other diagnostic tools bring into the picture.
Be a patient with patience, let the doctor make the (right) diagnosis
Be patient, since your doctor may not be able to make a medically responsible diagnosis until he or she follows the status of your health for a while. Mild systemic lupus is probably the hardest to diagnose, because of the mildness of changing symptoms. Also, misdiagnosis can be very dangerous. For example, multiple sclerosis and lupus have many similar symptoms, but the treatments are radically different and misdiagnosis can be dangerous if drugs for the wrong condition are actually prescribed. The doctor wants to be sure they are making a correct diagnosis the first time.
If, at the end of the day, your doctor still does not think you have systemic lupus, be glad. That means they have not seen enough serious concerns to decide that you have more severe or organ threatening disease. Your doctor may still find you are in the lower risk (majority) group of lupus patients that includes those whose diagnosis is limited to cutaneous lupus.
Remember to do your job to make the most of your office visits, to communicate important information up front that may help your doctor make the best decisions, and always remember your people skills! Remain a proactive partner in your medical care to get the diagnosis and ongoing treatment you need and deserve.