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Welcome to

A Lupus Warrior’s Guide in Uncertain Times

Your guide is designed to help you take control as you navigate the uncertainty of living with lupus.

 

You'll find resources about topics that can be challenging in our ever-changing world.

Take charge!

Start with what you can control.

Click on the tabs below to learn more.

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Lupus Disease Activity

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Listen to your body.

It can help you know if your lupus may be active.

A powerful way to manage your lupus is to track your symptoms, especially flares. A flare happens when some of the symptoms you have already had get worse or brand-new symptoms appear.

 

If you’re experiencing a lot of change in your life, it may be even trickier to spot whether something you’re feeling is caused by your environment or lupus. That’s why it’s helpful to note your symptoms as well as triggers (something that may cause your symptoms to appear).

 

Experiencing symptoms may mean that your lupus is active. Active disease and other factors can cause long-term damage to your organs. Being aware of your lupus and working with your doctor to keep your disease activity low is important. Together, you can develop a treatment strategy to help control your symptoms.

 

Take this quiz to help you recognize if your lupus may be active.

My Lupus Activity Quiz

It’s critical to recognize if your lupus may be active. Along with other factors, active disease can cause permanent organ damage. Take this short quiz to see if your lupus could be active.

1. How long ago were you diagnosed with lupus?

Up to 50% of people living with lupus can experience permanent organ damage within 5 years of diagnosis.

Patients diagnosed with lupus at a younger age are more likely to experience organ damage.

2. Do you routinely use steroids to treat your lupus?

While corticosteroids are useful at decreasing inflammation caused by lupus, when taken in high doses over time, they can also lead to organ damage.

3. Are you experiencing any of these symptoms?

This is not a comprehensive list of symptoms. It is not intended to diagnose your lupus activity and does not replace the advice of a qualified doctor.

Your lupus may be active.

You indicated that you are currently experiencing symptoms.

Active symptoms may mean your lupus is active. People with lupus are at risk of organ damage even if their symptoms seem controlled. Work with your doctor to determine if the symptoms you are experiencing are related to your lupus. Also, discuss with your doctor how to stay on top of your symptoms to keep your lupus disease activity controlled. Your doctor may be able to help you find treatment options to help control your symptoms.

Download our free Lupus Impact Tracker. 

It will help you and your doctor see how lupus may be affecting your life.

Your lupus may be active.

You indicated that you are not currently experiencing any of these symptoms.

Remember, people with lupus are at risk of organ damage, even if their symptoms seem controlled. This is why it is important for you and your doctor to work together. It will help you stay on top of the invisible signs of lupus activity through routine monitoring. Your doctor may be able to help you find treatment options to help control your symptoms.

  • How can you help take care and be cautious?

    • Focus on what you’re an expert on—how you’re feeling! 
    • Stay on top of your symptoms, both existing and new. 
    • Write down or record your symptoms and how long you experience them.
    • Be sure to share your symptoms with your doctor.
Did you know?

 

7 out of 10 adults in the US keep track of one or more of their health indicators.

 

According to one survey, tracking things such as weight, diet, blood pressure, exercise, or symptoms can improve how a patient can manage their disease. Tracking similar things could lead to new questions and conversations with your doctors and affect your treatment decisions.

Communicating

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Speak up! Tell others your needs and concerns.

It can be challenging to communicate with others about your lupus. Lupus is unpredictable, sometimes invisible, and brain fog can make it even more difficult.

The good news is that communication is a skill you learn over time. You have new chances every day to become a better communicator.

 

Here are some ways to be a better communicator:

  • Keep in mind your audience and the type of relationship you have with them.
  • Try to express your needs and feelings in a constructive way.
  • Don’t make any assumptions about how the other person might be feeling.
  • Try to understand and accept the feelings of others.

  • When you’re not comfortable attending an event or gathering

    It’s okay to say no. Help others understand that your lupus can be unpredictable and that symptoms can come on very quickly.

    Tip:

    Consider writing and practicing what you would say if that makes it easier. Here’s an example: Your friend’s birthday dinner has been on your calendar for a month. The morning of the dinner, you wake up feeling very fatigued.

    You can say, “I’m sorry, I won’t be able to attend. My lupus flared up this morning out of nowhere, leaving me so tired. I don’t feel up to going. I hate to miss this!”

  • When you’re ready to share at work

    With employers and coworkers, know that you have rights in your workplace and there are people there to help. Under the Americans with Disabilities Act (ADA), employees can ask their employers about reasonable accommodations needed to complete their jobs. Also, take time to understand your company’s sick leave policy (paid and unpaid), as well as government policies like the Family & Medical Leave Act (FMLA).

    Tip:

    You can check your company’s policies to determine options for accommodations. If you need some help, check in with your doctor to talk about what’s best for you.

    If and when you decide to request an accommodation, try to have a face-to-face conversation.

  • When you’re having a bad day during work

    Decide with whom you want to share the details of your health. Some coworkers may be understanding; others may not. If your supervisor and daily teams are understanding, discuss with them a way to convey that you’re having a difficult day; maybe you’re experiencing a flare.

    Tip:

    Providing some insight into your lupus and how it affects you may help build trust with your coworkers. Consider directing them to a trusted resource to learn more about lupus, such as the basics of lupus.

  • When you’re not getting what you need from your doctor and healthcare team

    In our changing world, the location or channel of your doctor-patient relationship may be different. What was traditionally a face-to-face relationship may be going virtual when telehealth appointments are appropriate. If you feel like an in-person doctor visit will better help you, explain why when you schedule your next appointment. It’s all about helping your doctor and their staff understand what you need.

    Tip:

    Remember that the same communication rules that apply for in-office visits can help you for virtual ones!

    • Take a look at your expectations. Understand your personal goals for your relationship with your healthcare team and what you hope to get out of the appointment.
    • Ask questions! Sometimes, the turning point in a doctor-patient partnership begins with a simple question. So don’t be afraid to ask a question if you don’t understand something.
    • Give feedback. When things go well, let your team know that you’re satisfied—everyone appreciates compliments. If the appointment isn’t going well, provide some feedback. When doing so, be polite while focusing on the facts. Above all, be kind to your team.

    Discover more ways to better communicate here.

Telehealth

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Turn to telehealth for convenience and more.

A telehealth appointment, or “virtual visit,” is a way to meet with your doctor without leaving home. Telehealth appointments are a great option to help minimize your exposure to viruses in an office. Plus, it can be helpful during a flare when it may be uncomfortable to travel.

 

As a lupus patient, it may be important for you to have face-to-face visits with your doctor. Even if your symptoms seem to be under control, you should still be doing routine lab work and evaluations. Your doctor may wish to see you in person if a physical examination would make a big difference in treatment decision-making.

 

Some symptoms also require an in-office visit. Be sure to call before making an appointment so you can chat with someone in the office to find out if you need to be seen in person or not. If your provider has a patient portal, you can try reaching out to your doctor to schedule a symptom check-in to find out if an in-person visit is best.

Here are some other benefits to using telehealth.

  • 1. Convenience

    • For appointments during weekends, holidays, or vacations, or when offices have limited hours.
    • Can save the time and expense of traveling to your doctor’s office.

  • 2. Cost

    • Some healthcare providers cover telehealth visits at a different rate than a typical in-office visit.
    • Be sure to ask your healthcare or insurance provider to see how telehealth visits are covered.

  • 3. Access to Specialists

    • If you don’t live close to any specialists, it can be difficult to get their expert opinion. Specialists are doctors who have additional training or certificates related to certain diseases or conditions.
    • Telehealth allows you to connect with these doctors from home.

Remember, if you are using telehealth for your rheumatologist visits, lab work is an important part of monitoring your lupus.

Tip: Ask your doctor’s office how you can best continue to keep an eye on the invisible disease activity of your lupus.

telehealth-appointment

What should you expect?

With telehealth, a lot of the same rules and preparation steps of an in-person visit still apply. During the telehealth visit, your doctor will assess your symptoms, give you a diagnosis, and if needed, may authorize a prescription.

Note that telemedicine prescribing laws may vary state by state, so it’s a good idea to know the laws of your local area.

  • Healthcare Value and Affordability: Some providers cover televisits at a different rate than a typical in-office office visit. 
  • However, it’s helpful to determine in advance if your healthcare provider or insurance covers a televisit, because coverage can vary.

How to prepare for your telehealth appointment

  • Before

  • During

    • Start with your most important questions.
    • Be aware that there may be a high volume of calls, so you may have to wait to be connected.
    • Talk clearly so you can be heard.
    • Make sure you can be seen through your camera.
    • Clearly present your symptoms. Use or upload photos if your device and app support doing so.
    • Answer your healthcare provider’s questions as directly and to the point as possible.
    • Make notes of the provider’s recommendations.
    • Ask questions and clarify if something is unclear. Play back what you’ve heard or recorded in your notes, so your doctor can clarify, if necessary.

  • After

    • Follow your doctor’s instructions.
    • Follow up with questions, concerns, or if the instructions were unclear.
    • If you’ve had any tests, make sure that you follow up with your doctor to learn the results of those tests.
Woman With HeadphonesTelehealth technology tips to think about:
  • Are you going to use your smartphone, tablet, or computer for the visit? Will the visit be a simple phone call, or will you be using video or an app?
  • Is your device fully charged or plugged in?
  • Do you have a reliable internet connection?
  • If you’re using an app, such as Zoom, FaceTime, or Skype, make sure you have the app downloaded in advance.
  • If you are using an app or a portal from your HCP, make sure it’s downloaded in advance, that you have your login credentials handy, and that you test the site’s URL.
  • Close any apps that may be competing with your device’s bandwidth.
  • If you’ll be using video, consider uploading your symptom tracking journal, or any photos of current medications, symptoms, or areas of concern.

Telehealth can be a helpful tool for staying on top of your lupus. Keep in mind, it may come with some challenges, too. For example, you may not feel as supported by your healthcare team since they aren’t physically there.

But know that you’re supported and also make an effort to keep them informed. You are the best person to keep them informed.

Get tips to manage your healthcare team.

Taking Care of You

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Make a routine of putting yourself first.

In addition to your treatment plan, taking care of yourself is another way you can help manage your lupus. When living with uncertainty, routine can be your best friend. It’s also important to adapt your routine as needed.

Nutrition and sleep are both a part of your daily routine that are within your control. Stress doesn’t follow a set routine, but make sure to manage your stress levels, as well.

  • Nutrition

    One of the ways you can take care of yourself daily is through nutrition. Everything you eat and drink—the food and beverage choices you make day to day and over your lifetime—matters. Your diet choices are equally important during times of uncertainty when your routine may be thrown off.

    If you start to feel your focus on good nutrition sliding, call a timeout with yourself. Assess what caused your routine to shift. Then adjust accordingly. Getting back to the basics is a great way to start taking back control, too!

    Tip:

    Consider tracking what you eat along with your symptoms. It can be convenient to track them together as a part of your daily routine.

    Here are some nutrition basics to be mindful of each day. They can help you keep track of your nutrition.

    • Know how to read and understand food labels.
    • Be aware of serving sizes.
    • Watch your portions.
    • Eat slowly.
    • Stop eating when you start to feel full.

    Don’t forget. Keeping a good diet doesn’t have to be as difficult as you think. It’s about having an overall pattern of good choices, not being rigid or perfect all the time. Talk to your doctor if you have any questions about proper nutrition.

    Get health food tips and recipes here.

  • Sleep

    Taking care of yourself during the day is important, but you can also help your health at night. Sleep is a basic human need—just like breathing, eating, and drinking. It’s a vital part of the foundation for good health and wellness. Getting the right amount of sleep has a positive connection with better health outcomes. The timing, duration, and quality of your sleep can be important factors of your health

    If you’re living with lupus, sleep can help you avoid fatigue and brain fog. Though, sometimes, you may not wake up feeling refreshed. Some sleep problems for those with lupus can include restless sleep, poor-quality sleep, not enough time asleep, problems falling asleep, and more. When you’re not getting enough sleep, you can experience increased inflammation in the body, which can, in turn, worsen symptoms of fatigue, pain, depression, poor attention and concentration, and memory.

    Tips for better sleep:
    • Keep a consistent sleep schedule (both bedtime and rising, even on weekends).
    • Maintain a sleep-friendly environment (dark, relaxing, and just the right temperature that you like).
    • Avoid watching television and using electronics before bedtime, as they can signal your brain to stay awake. Instead, use that time to reflect on your day or record any symptoms that you may have had.
    • Don’t eat large meals or drink caffeine or alcohol before bedtime.
    • Get some exercise during the day. Being physically active during the day can help you fall asleep more easily at night.
    • Keep the bedroom designated for sleep (and sex).

    Learn more about making good sleep choices here. Talk to your doctor for more suggestions about sleep or if you have any questions.

  • Stress Relief

    Emotional stress is a common lupus trigger. Living with lupus brings with it a level of unpredictability, so it’s good to keep managing your stress and anxiety levels.

    Here are some healthy ways to manage your stress and keep a positive outlook:

    • Connect with your loved ones using technology. Call, video-chat, email, or text your family and friends. It will help keep your mind off the negative and remind you that you’re supported.
    • Look to creative outlets. Release stress through creative activities such as drawing, writing, or anything you enjoy.
    • Join an online support community. Connecting with others living with lupus can help you feel a different kind of support. One that helps you feel understood and validated in your concerns.

    Find more ways to relieve stress here.

    "I understand what all of you are going through."

    Join the discussion and feel the support:
    @UsInLupus