"I have cried in my car after leaving the doctor's office so many times, and not because I got bad news. I remember after I got my kidney biopsy I went in for the results. I saw the Nurse Practitioner who told me I had WHO Class VI Lupus Nephritis. I said that I thought it only went up to Class V. She informed me that my doctor thought the same thing and that he had to "Google Class VI". Then she told me the 40mg of Prednisone I was taking would do nothing to help, my kidneys would fail and need a transplant. She then sent me home with another appointment scheduled for 1 month later. No prescriptions, no instructions, nothing but a Prednisone taper schedule. I freaked out! I was convinced that I was going to drop dead at any moment! That my kidneys would fail, I wouldn't realize it and I would die.
"I called the doctor everyday at first with new symptoms and questions. I scoured the Internet for any information I could find about Lupus, kidney disease, health, etc. I cried, I stressed out, I made myself even sicker. Eventually as I learned, talked to my doctor, talked to family, talked to others who had been through the same things, days turned into weeks, into months and into years. Now my kidneys have been mostly stable for several years, they were wrong about the transplant, and I don't cry when I leave the doctor's office anymore!"
Get a good doctor - You need a doctor who is educated, but also as important is a doctor whose personality works with yours. You have to feel comfortable telling them anything. You also have to have a doctor that listens to your concerns and thoughts. We always suggest University or teaching hospitals and clinics. They just seem more interested in the science of medicine rather than the business of it.
Prepare for the appointment - Writing down symptoms and questions before you go to the doctor can cut down on getting tongue-tied, shy, or just forgetful. Keeping a journal of symptoms, triggers, diet, etc. can also be helpful.
Bring a friend - A second pair of eyes and ears can help you remember what the doctor said as well as remind you of things to tell the doctor
Don't leave until your questions are answered - even if the doctor seems to be getting impatient. It's their job to explain, and your job not to say you understand when you really don't.
Get educated - Learn as much as possible about Lupus, it's treatments, diagnosis, etc. This, again, will help you communicate with your doctor as well as help you participate in your treatment.
Research everything - Every time you get a new medication or test you can go home and research the dosage, side effects, why it is prescribed, what the test results mean, how the test relates to Lupus, etc. You can research new symptoms, other causes of your symptoms, and much more.
Ask "what else could this be" - Sometimes doctors jump to the most common diagnosis, that doesn't mean it is the right one.
Be a medical consumer - Always remember you have choices. Your doctor is there to guide you. Doctors can not be in your body, they don't know exactly how you feel. Your instincts and input are a vital part of your care
Remember medicine is not an exact science - Doctors are not Gods and there aren't always easy answers, sometimes there are no answers at all. There is still a lot we need to research, especially about Lupus.
Put yourself in the doctor's position - That new symptom may seem very weird or scary to you, but the doctor may see it 4 times a day, they may seem like they don't understand, but maybe they understand more than you can at that moment. Building a trusting relationship with your doctor will help with this.
Get a second opinion - If you are ever uncomfortable at all with your doctor, diagnosis, or treatment a second or even third or fourth opinion never hurts.
Get support - Support is vital. You need someone to bounce things off of, someone to vent to, and someone to relate to. You can get this support from friends, family, support groups, online, etc. We always reccomend however that you reach out to other Lupus fighters, nobody can understand quite the way they can.
Time - In the end, time and experience will make you more comfortable. As your knowledge and confidence, in both yourself and your doctor, grows you won't feel so lost.
Cure4Lupus.org
