About Lupus

Everyday Living with Lupus: Be Proactive

Undoubtedly living with lupus has many challenges. Everyday Living with Lupus: Be Proactive is a webinar that helps you learn the steps you can take to help cope with lupus and improve your everyday quality of life. It is available here.

Lupus not only impacts you physically, but also socially, financially, emotionally, and spiritually. Creating a coping toolkit will provide you with concrete ways to take some control over these areas of your life and better cope with lupus. Through this webinar, you will learn what to include in this toolkit and will be linked to resources for further reading and learning. Download the presentation and use it as a handbook!

Coping Toolkit – The Big Three

There are three foundational tools to keep in your coping toolkit:

  1. keeping your medical appointments
  2. taking medication as prescribed, and
  3. finding support.

Medical Appointments and Medication

In order to be healthy enough to utilize the other tools, you must keep medical appointments and take medication as prescribed. Using these two tools allows you to work together with your doctor to manage flares and stabilize lupus. They also help prevent organ involvement and damage and other conditions and complications. In addition, they help with managing medication side effects.

Comfort in Company

Finding support helps prevent possible feelings of isolation, anxiety, and depression. Since lupus is often misunderstood by people without chronic illness, it’s important to meet and connect with people who understand your experience. There is healing in connecting with people who “get it.” And it is a relief to feel validated that you are indeed not “crazy” or “lazy!”

More Tools to Try

Beyond these, there are a variety of tools that you can include in your toolkit, including nutrition, physical activities, stress management techniques, learning to communicate with your doctor and more.

Don’t try to use all of these tools at once! Pick one that appeals to you and start learning to use it little by little. If you go at your own pace you are more likely to stick with it.

Questions and Answers

During my webinar presentation, I answered some audience questions.  But I didn’t have time to get to them all, so I answered a few here.

Q.  What is considered a flare?

With lupus, when a person experiences periods with few or no lupus symptoms, this is referred to as remission. When a person experiences an increase in lupus symptoms, this is called a flare. Flares can be unpredictable in both onset and length. They can include symptoms that have occurred before or there might be new symptoms. It is helpful to keep a record of symptoms, which you can bring to your next rheumatology appointment. You can use a notebook or a symptom tracker. If you are experiencing a flare, call your rheumatologist and schedule an appointment as soon as possible.

Q.  I find it totally hard to explain my feelings based on symptoms without feeling ashamed.

It can be difficult to talk about lupus. Having lupus is an emotional experience and people with lupus aren’t always met with empathy or understanding. I don’t know your situation, but I wonder if there is a lupus support group in your area that you can attend. It might be easiest to start talking about lupus with people who understand what it’s like. They can also share with you what it was like when they started talking about lupus.  It can feel much safer to share your feelings in a supportive environment. If you don’t have a local support group, during the webinar I offered several other resources where you can get support. There’s no shame in having lupus. You didn’t ask for it, and you are living your life in the best way you can despite lupus.

Q.  I am younger and going out for drinks late is still important to me. You said not to drink in excess. I don't drink more than 2 nights a week, but when I do I am going out late with friends and having enough drinks to be drunk. Is this drinking in excess? Am I doing myself a big disservice by still doing this despite having lupus?

I am not a medical professional so I strongly suggest speaking with your rheumatologist about what is considered too much alcohol. But I do hear, quite often, that people who go out drinking with friends don’t feel well the next day or days. Some still go out with friends but don’t stay out as late or drink as much. Drinking alcohol takes a toll on your body no matter who you are, but with lupus you don’t want to burden your body to the point that you have a flare.  I think it’s important to check in with yourself to see how you feel the next day after drinking a lot and staying out late. If you notice increased lupus fatigue or pain, or other lupus symptoms, you might want to reconsider the amount you drink and how often you drink. Also, please speak with your doctor or pharmacist about any possible medication interactions.

Q.  Can you talk a little bit about getting pregnant with Lupus?

If you are planning on getting pregnant it is important to tell your rheumatologist. Speak with your rheumatologist long before you start trying to get pregnant. It is important to get your doctor’s ok. Lupus should be inactive for several months. Your doctor will determine if your lupus is inactive by examining you and looking at your lab results. Your doctor will also discuss medication options with you and work on taking you off any medication that is not safe for pregnant women. To learn more about this topic listen to our webinar entitled Lupus and Pregnancy.

Q.  I am a former marathon runner and was diagnosed with lupus last year. I am feeling a lot better and running a bit, but do you think it's smart for people with lupus to train and run marathons?

The S.L.E. Lupus Foundation has a team in the NYC Marathon every year, and sometimes runners include people with lupus. That’s not to say that everyone with lupus can run a marathon. There are plenty of people without lupus who cannot run a marathon. This is definitely something to speak with your rheumatologist about to determine if this is a good idea for you. I’m glad to hear that you are feeling well enough to return to running.