Sharing the Journey: Advice for those Newly Diagnosed with Lupus

The Sharing the Journey series is by you and for you. In your own words, we highlight the perspectives and personal experiences of people who struggle with lupus each day.

This month, we asked Sharing the Journey participants the following question:

What key questions should every newly diagnosed person with lupus ask their health care provider? And what piece of advice do you wish someone had shared with you when you were first diagnosed?

There are three key questions I would suggest anyone newly diagnosed with lupus ask their rheumatologist. First, what are the preventative measures you can take to avoid a flare? If you know what to do to prevent yourself from getting sick, you can prevent yourself from even getting into a danger zone. Second, what should you do when you're feeling a flare come on and you're not feeling well? Knowing how to stop a flare before it gets worse is key. Third, what are the warning signs that your flare is dangerous, and you need to seek immediate medical attention? Knowing how to identify dangerous symptoms can potentially save your life. When I was diagnosed, I wish someone would have told me that from now on I should always expect my body and fatigue level to impact what I do. My body will always win, and if I don't respect it when it tells me it's fatigued, I will suffer serious consequences. There is no mind over matter with lupus - your body will dictate what you do and how much you do. If you learn to respect your body and honor its limits, you can still live a full and happy life!– Becca

I think every newly diagnosed person should ask their providers for information about support groups, so they know they aren't alone and that there are others who have experienced or are experiencing what they're going through. Also, ask about treatment options to control flare ups, since there are more medications available to help a flare now than when I was diagnosed in 1993. I wish someone would've told me that lupus is not a death sentence. I spent a lot of my childhood thinking I was going to die since I was sick. – Jaime

A key topic to discuss with your health care provider are your concerns regarding what things are good and what things are not good for lupus, from sun to exercise to foods and medicines, etc. When I was first diagnosed, I had little to no knowledge about this autoimmune disease. Therefore, what may seem like basic knowledge for the doctor, is new information for you. No question is a stupid one when you are trying to educate yourself on this new diagnosis. I have two bits of advice to share. #1 - You can still have a normal life! My first doctor told me that it's possible and her goal was for me to still be able to enjoy my life. In the moment when you are sick in the hospital it is so difficult to imagine that. However, it is true. My doctor tells me to do what you can. So, if I feel ok to go for a long walk, or even play a soccer game, I do it! And that brings me to #2. Listen to your body! That is so crucial to keeping yourself healthy. After years of having lupus, I've learned when my body is screaming stop and rest! There are little things (or maybe big ones) that can tell you that you need to say no and just rest. Everyone is different, however, for me, my throat gets sore, I get more fatigued, and my joints swell up. That is the first sign that my lupus is telling my body to stop and rest. Really getting to know your own body helps tremendously with preventing yourself from ending up in the hospital over and over. – Sami

That's a really tough question. But I think something along the lines of "how can I live my best life with lupus?" or "how can I maintain my goals while living with lupus?" Which leads into the advice. If you don't like a doctor, find a new one. You aren't obligated to suffer through a practitioner you cannot stand, who doesn't support you or see you as a whole person. – Leslie

Receiving a lupus diagnosis can bring on overwhelming emotions as you try to understand the journey that lies ahead. It’s helpful to ask questions like the ones our lupus warriors shared above and learn from the experiences of individuals living with lupus. In doing so, you’ll acquire more knowledge, feel at ease, and be better prepared to take on this new part of your life.

With the Lupus Foundation of America’s large network of connections through LupusConnect and support groups across the country, you won’t have to embark on this journey alone. Doing initial research to grow your understanding of lupus, openly discussing with your doctor current symptoms, exploring available treatment options, learning about the do’s and don’ts for living well with lupus, and most importantly - surrounding yourself with supportive individuals that know your experience firsthand – are important steps to live well with lupus.