Story: Patient the last one told of lupus diagnosis

Ed note: The woman who shared this story asked that it be shared anonymously. 

I was diagnosed with lupus around the age of 19, and I can honestly say that the process of actually getting a diagnosis from a doctor was harder on me emotionally than the diagnosis itself.

All my life, I've had joint problems, fainting spells, and general issues with falling ill. I’ve had more blood sugar tests done in my 25 years than I can count, because doctors were always convinced that was the problem (even though the tests came back normal every single time). Finally, when I was 19 and getting ready to enter my sophomore in college, the health problems became so bad that they were affecting my class attendance and my ability to work. We were convinced I had a chronic condition; I’d even developed the classic butterfly rash that comes along with lupus (it’s here that I should thank my mom for advocating for me and researching chronic conditions, so we could even have that knowledge in the first place). When I was home from school for the summer, we (my mom and I) went to my family doctor, who diagnosed my joint pain as tendinitis and gave my ibuprofen for the pain and swelling. When that didn’t work, we returned, and were given the same diagnosis, with a prescription for naproxen this time. The third time we returned, the doctor finally referred me to an orthopedic because there was “nothing else [he] could do.” So, I went to the orthopedist, who did x-rays and basic tests, and couldn’t find anything wrong with my joints (focusing on my knees, which were, and still are, the biggest problem for me).

At this point, I was unable to work, could barely eat, and was getting sicker by the day. I’d lost a lot of weight, and was down to almost 80 pounds, which on my 5’3” frame was dangerous. The rash kept cropping up, the pain and fainting were getting worse, and so we went back to the family doctor again. Twice, he told me that he was positive the rash was obviously just allergies, and that I should stop researching things on my own because I was just “scaring myself.” My mom essentially intimidated him into running some more blood work, which he was vehemently against, but did anyway (again, thanks mom for being a warrior). While I was having blood drawn, I passed out hard, and after my mom all but forced them to because she was convinced something was really wrong, the doctor had the nurse take my blood pressure while I was still on the floor. It was 80/44, which is really in the danger zone. After I was okay to leave, she told this doctor to transfer my records over to her personal doctor, and we left and never went back.

After a couple of good visits with my mom’s doctor, who ran a host of tests, including an ANA panel, I was referred to a cardiologist and a rheumatologist because, like us, this doctor was concerned about an immunodeficiency or some other chronic illnesses. I had several tests done at the cardiologist to make sure my heart wasn’t causing the dizziness and fainting problems, and though my heart was okay, a tilt-table test did show that I have vasovagal syncope. Essentially, when I stand for too long or change positions from lying or sitting to standing, my blood vessels widen (when they aren’t supposed to) and all the blood rushes away from the important stuff, causing lightheadedness, dizziness, and sometimes fainting. Because of this, my blood pressure naturally runs low, and so I have to be careful when I’m out anywhere.

The rheumatologist, unlike my recent doctors and much like the first doctor I saw, was awful. He refused to look me in the eye when I was explaining my symptoms to him. He sat with his back to me the entire visit. He never once looked at me or did any sort of physical exam. When we told him about the ANA panel tests and that my general doctor was concerned it might be autoimmune, he looked through a file, handed me a sheet of information about a drug, Plaquenil, said, “You walked in here, so it doesn’t seem like you’re in that much pain. I’m not going to give you anything. Read this and come back if you decide that you really need meds,” and left the room. By that point, I was sick, miserable, and so emotionally drained that I started to cry. My mother and boyfriend at the time (now-husband) were with me, and took care of checking me out with the nurse while I stood there and sobbed. The nurse pulled up my file, looked at me, and then asked, “Oh, is she upset because of her diagnosis?” Of course, everyone stopped in their tracks. I did not leave that part out of the story above – I had not received a diagnosis. When asked, the nurse just said, “Well, it says here the doctor has diagnosed her with lupus.”

And that was it. This doctor technically diagnosed me with lupus (about 6 months after the first doctor visit I described) without ever actually speaking to me about it, without running any more tests or even looking at me physically, and after that, didn’t take my pain seriously or feel it was necessary to discuss a treatment plan or anything of the sort.

Since then, I’ve found better doctors than those, but I’ve just recently moved to a different city and state, and am terrified of starting the process over. Every time I see a new doctor, my anxiety skyrockets, because of how much I fear not being taken seriously. At any point, a doctor could refuse to write my prescriptions or do anything to help me because they don’t take me seriously, and at the very least I would have to start the whole process over again. Who knows how long I’d have to go without medication for my condition before I found someone who will treat me decently?