Sharing the Journey: Different Experiences

This series – Sharing the Journey – 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. Mostly, we celebrate what makes the lupus community strong by sharing our journey, together.

Living with lupus is a different experience for each individual. What’s the most surprising thing you’ve learned or experienced since you were diagnosed with lupus?

One of the most surprising things I’ve learned and experienced after my lupus diagnosis is that a lot of times, the medications used to treat lupus can have damaging side effects. Every medication has a list of potential side effects that you personally may never experience, but there is a lot of potential for major health issues due to medications used to treat lupus. For example, one of the most commonly used medications to treat a lupus flare is Prednisone. For me, when flaring, Prednisone is a Godsend; however, Prednisone is a medication you can’t stop abruptly – you have to wean down your usage. Sometimes your body becomes dependent on the medication or your health starts to worsen, and you have to increase the medication and start the weaning process again. Although it’s often necessary to use medications that may have major side effects, I have found it to be truly difficult to cope with.   – Angel

The most surprisingly thing I’ve learned is how difficult it can be to distinguish lupus from the flu, especially when the seasons change. Sometimes it’s hard to know whether I need to go to the doctor for the flu or if it is a lupus flare.  – Kayla

I think the most surprising thing I have learned since being diagnosed with lupus is how much sleep my body actually needs. In high school, I used to get very little sleep and give myself very little rest time because I had so many commitments. Now that my health is a major variable factor in my life, I have to pay close attention to what my body is telling me. It's paradoxical because I use to think that if I just ignored my body and pushed through, I would get more work done and achieve more. Now, I’m awake for fewer hours in the day, but those hours are much more productive and joy-filled! When I give my body the rest it’s craving, I am actually able to accomplish more and feel like I am getting the most out of life!  – Becca

When I was first diagnosed, I was surprised to learn that chemotherapy was sometimes used to treat lupus and it was the worst thing I experienced. I was only 12 years old at the time and I didn’t understand what was happening to my body. I just knew that I needed to undergo different surgeries and treatments to get better. If it wasn’t for that, I wouldn’t be here today. – Kyra 

For me, the most surprising thing I’ve experienced with lupus is the lack of treatment options. There are a lot of medications that are used off label to help treat symptoms, but only one medication has been developed specifically for lupus treatment and approved by the FDA. When you are diagnosed with a disease, you expect the doctor to say, “Okay, here is how we are going to treat it.” With lupus, it’s more like, “Let’s try this medication and if it doesn’t work we’ll try something else, and if that doesn’t work, we’ll try something else,” and so on. This can be extremely discouraging and is the reason why it is so important to educate people about lupus. We need more research and more drugs to help fight this battle.  – Roxi

Whether you’re newly diagnosed or have been navigating life with lupus for some time, the disease will continually keep you on your toes with its unpredictability and variability. Each day, you’re learning about treatment options, medication side effects, the support you need, and your body’s abilities and limitations. No one’s lupus journey looks exactly the same, and the amount of new information you take in can feel overwhelming.

That’s why we created the National Resource Center for Lupus (NRCL) – to give you a central place to help you find and track information about lupus. Whether you want to speak with one of our certified health educators,track your symptoms,find the right questions to ask your rheumatologist, or join our LupusConnect community to engage with others on their experience with lupus, the NRCL provides you with a great starting point to learn more about lupus at your pace.