As a Lupus Patient, I Have Learned to Be Prepared

Darla Gay avatar

by Darla Gay |

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Following your lupus diagnosis, visits to doctor’s offices begin to multiply. Sometimes I’ll have consultations with three different doctors in the same week. If they order tests, it means even more appointments. 

Having spent all of this time in medical clinics, I have learned that if I come prepared, it makes my life a little easier. 

I keep a list of my medications with me at all times

On my list, I include the name of the medication, the strength, and the dosage. At the last count, I had 17 prescriptions. Because of lupus-related memory issues, I can’t always recall what medication I take for which symptom. So, I also include the doctor’s name, address, and phone number, and a note describing why he prescribed each medication. 

I keep a notebook and pen handy

At home, my notebook is close by so that I can write down things I want to remember or tasks I need to do. At the doctor’s office, I make notes about new diagnoses, prescriptions, and tests that he wants to run and why. If I don’t do it right away, I might not remember all of the details. I also bring a list of questions and issues that I want to discuss during my visit.

I want to learn from my doctor

If my doctor or nurse mentions something unfamiliar, I ask questions. If they’re reluctant to answer them, they might not be the right fit for me. I try to understand all of the various diseases that have taken up residence in my body. I need a doctor who will discuss treatment options with me, including medication benefits and side effects.

I bring something to read

You won’t know in advance if your doctor will have an emergency or if previous patients will take up more time than they’ve been allocated. You can’t control every situation. I come prepared with a good book, so I don’t mind waiting. I used to carry a physical book around with me, but my iPad has taken its place. I have a Kindle Unlimited subscription, so I always have something satisfying to read. Reading helps to balance my blood pressure and my levels of agitation. 

When you have lupus or another chronic illness, frequent visits to doctors are inevitable. If you spend a few minutes preparing ahead of time, it makes your appointment go more smoothly. You should walk out of the office feeling like you and your doctor are a team in the fight against your disease. 


Note: Lupus News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lupus News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to lupus.