Tips to Help Ensure Your Physician Addresses Your Lupus Issues

Kellie McRae avatar

by Kellie McRae |

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It seems to be a growing trend that doctors have a lot less time to spend with their patients. Many make you sit in a room all alone long after your vitals have been taken, with old magazines full of old news.  While you’re sitting there, all of the things you have been feeling since the last time you saw the doctor are going through your mind, but are you ready to convey your concern to your doctor, allowing him or her to hear not only the the important issues, but also to help you.

This often is the scenario when you have a scheduled visit. However, there are times when you are there unexpectedly because lupus, like a wayward child, sometimes acts up. These are the times when you may be dealing with emergency room personnel, and that can be worse than dealing with your primary care or a rheumatologist because you are triaged; your pain may be worse by the time you’re seen than it was when you arrived at the ER. Workers in the ER are often harried because they are dealing with so many people, it’s easy, sadly, to get lost in the shuffle.

Here are a few suggestions about how to be heard by your healthcare providers:

1. Write down the things that are causing you the most difficulty. — This shows you have put some thought into what is ailing you most. Remember, you are dealing with someone who has at a minimum had an additional eight years of schooling since leaving high school. They are notorious note-takers in most cases, and will be able to line up their brain with the idea that you thought out what you needed to address. You may be like me, I stink at taking notes, but I’ve learned it helps them slow down and helps keep me from rambling, causing them to tune out or not take my problem seriously.

2. Be firm when they become dismissive. — I don’t mean make a scene, because this will be met with them completely shutting down or calling security. But, when you feel they are not listening, simply let them know that your impression right now is that they are being dismissive. Don’t beat around the bush about it; they will be caught off guard, but also will not want you to think you will go up the ladder to share your concerns. I have found that firmly stating that I feel my issue is not being properly addressed makes them change their tone and pay more attention.

3. Know your pain level. — We are all familiar with them asking us to assign a number to our pain. When they ask, if you are not at 10, do not state you are. If every time you arrive, your pain level is a 10, even for a routine visit, it will cause them to think you are exaggerating. This does nothing to help you in the long run.

4. Don’t smile or joke if your pain is higher than a 5. — I learned this the hard way. It’s hard enough for anyone who is not battling a chronic illness like lupus to understand that we don’t look sick, but our bodies are in full rebellion. Then you smile or laugh, and again they believe you are exaggerating and may be more likely to be dismissive. I am a person who laughs and teases no matter what because it helps me not to stress or worry. I learned that this made it increasingly more difficult for me to get their full attention when I would go in with problems. I would have to revert to tip #3. Finally, I just stopped being myself when I would see doctors in the U.S.

5. Remain calm. — When your body is in serious pain, this can sometimes be the most difficult part of all. If you have a loved one who can go with you to your appointment or the ER, it often is easier for them to advocate calmly on your behalf. When we are in pain, often we are at a heightened emotional level that can cause us to lose our tempers sooner or become unsure. This is where we miss asking critical questions if the doctor’s demeanor is dismissive or makes us feel we don’t know what we are talking about. That prevents the doctor from fully addressing the issues you sought help for in the first place.

When we are battling pain, encountering a dismissive doctor can be very trying, but if you can just keep a few of these tips in mind it will help ensure your concerns are addressed.

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.


Sharri avatar


Thanks for the article. I have a been tendency to joke or downplay the pain. Like most you are use to being in pain and I think that it hurts me in the long run. They don't think my pain is that bad when it usually is. I need to quit joking and smiling about it. Wish the drs could see me at home on my bad days.

Kellie McRae avatar

Kellie McRae

You are welcome Sharri, I am the same way. I just think that no matter what I can always find something to smile about but Dr.s seem to think that means you aren't in pain instead of seeing it as a personality trait that should make their jobs more pleasant.


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