Why Doctors Misdiagnose Lupus (& What You Can Do!)

Record your symptoms Keeping records of your symptoms — how they feel, how bad they feel, where you felt them, and so on can help you track patterns in your symptoms. Showing a pattern is a great way to tell doctors that there is something more solid than stress here. In particular, watch and record any joint pain, brain fog, mouth ulcers, and skin lesions as these are the most common symptoms of lupus, but also keep track of any other symptoms that you want to bring to your doctor. You could even check out the LupusCorner app on iOS and Android Be descriptive It can be difficult for doctors to match a patient’s feelings to a condition. People feel things differently. The more descriptive you are, the more that a doctor can glean from your symptoms. This can mean getting creative with your analogies. If you have periodic fatigue spells where your body feels like it’s a construct made of stiff, cold iron with unlubricated joints and a low battery that goes to zero the moment that you think about getting out of bed… tell them that. It can make them relate to you and your struggle, which can shake them out of their dismissal. Other doctors don’t do well with a creative analogy. They don’t expect medical terminology — and may even become more dismissive of you for it. But, if you tell them that you regularly have a headache that feels like a constantly increasing pressure against the back of your skull that eventually becomes so painful that it is blinding and lasts for hours on end, then they may be more likely to pay attention. Bring a buddy Being alone in an exam room can be stressful. It’s easy to cave in and shut down under pressure from the doctor. This is especially true if you are fatigued, are in the middle of a spell of brain fog, have social anxiety issues, or feel ignored. This is where a friend comes in. Bring someone who can advocate for you and your symptoms, who can back you up when you feel beaten down, and can ask the questions that you can’t remember in-the-moment. Having someone else verify your symptoms — or even keep track of them — can be very convincing to doctors, and if the doctor is not listening to them, they may have the “spoons” to stand up and take you elsewhere. Lupus.org and this website have a few more tips that might help you prepare. Be blunt Listen to your instincts, and tell your doctor what is happening straight out. If you hurt, you hurt. If you feel stressed, you feel stressed. At the doctor’s office, you don’t need to be modest or sugarcoat the challenges you are having. You can be grateful for the good days, or for the life you have. But in the doctor’s office is the time to tell them that you need help. Be persistent Even if your other strategies aren’t getting through, be persistent. Don’t worry about annoying them — if the doctor orders the ANA blood test that you need because you or your friend badgered them into doing it, it might not be the ideal situation, but in the end, you are doing what is right for you.

Still puzzling over something?