Living Well With Lupus: Tips for People With Lupus
Living with lupus can affect your social, emotional, and financial wellbeing. But there are things you can do to cope with lupus and get the support you need.
Learn ways to manage lupus
When you’re living with lupus, managing your condition can be a challenge — and it affects more than just your health. Dealing with lupus symptoms like pain and fatigue can also make it hard for you to show up the way you want to with your friends, family, or coworkers. You might need to ask for help managing your responsibilities at home, school, or work. And because lupus is defined by its flares (periods when lupus symptoms get worse) and remissions (periods when people with lupus feel better), living with lupus can be unpredictable. Your symptoms might look and feel different from week to week.
The good news is there are many steps you can take to manage your lupus, so it won’t affect your day-to-day life and relationships as much. You can:
- Educate yourself and others. Learning more about lupus — and sharing that knowledge with the people around you — can help all of you better understand what to expect.
- Communicate with your loved ones and coworkers. Be open with your friends, family, and coworkers about how you’re feeling — especially when you’re experiencing lupus symptoms. Let them know when you need help and how they can support you.
- Prepare for what you’ll do when you have a flare. Having a plan and a support system in place can make managing your lupus easier.
Check out these resources to learn more about lupus.
Talk to the people in your life about your lupus
Communicating with the people in your life about how lupus affects you is key to getting the support you need. Together, you can come up with strategies to manage lupus flares and disruptions when they come up.
It can be helpful to talk about:
- How you’re feeling. Be open with your loved ones about your lupus symptoms and your feelings about having lupus — and let them know when things change. This can help people understand when and how they can support you.
- What you’ll do when you have a flare. Work with your loved ones and others in your life to come up with a plan for how you’ll manage things if your symptoms worsen and you’re not able to do your usual activities. For example, you could arrange for another parent to take your child to school when you’re not feeling well.
- What kind of help you need. At times, lupus can make it hard to keep up with daily life, and sometimes it’s not easy to ask for help. But keep in mind that your loved ones probably want to find a way to help — and getting time to rest and lowering your stress can help you feel better faster.
If you’re a parent, your children may have concerns about your health — including whether or not you will die from lupus. Keep in mind that children may not know how to talk about feelings or concern or uneasiness.
Being as open as you can be with your children about lupus and the changes it brings — both to your health and to your family activities — can help your kids cope.
Plan ahead
Because lupus is a disease with flares and remissions, it’s important to make a plan for what you’ll do when you’re not feeling well. Being prepared can help you minimize disruptions to your plans and your loved ones’ activities.
Here are a few examples of steps you can take to prepare for and manage a lupus flare:
- Have your medicines on hand. Take steps to make sure you don’t have any lapses in getting your medicines — for example, you can see if it’s possible to have your medicines delivered from the pharmacy.
- Make a plan for grocery shopping and meals. When you’re not feeling well, getting to the grocery store can be a challenge. Consider asking a family member or friend to shop for you. Or make and freeze some meals when you’re feeling well, so you won’t have to cook if your lupus symptoms get worse. You could also take advantage of convenience services, like grocery delivery, if possible. While these services can be costly, they can be helpful when you’re having a hard time getting to the store.
- Talk with your workplace or school. Talk to your manager or teachers about what to do when you’re experiencing a lot of lupus symptoms. It may be possible to work or study from home when you’re not feeling well — or find other ways of getting the support you need. Learn more about workplace accommodations that might help.
- Get support with routine tasks. It can help to have someone that you can call when you’re not feeling well. Ask your friends and family if they’d be willing to step in when you need some support. For example, if you have young children, consider setting up a carpool group with other parents so that your kids can still participate in their activities.
- Try to make time for self-care. Dealing with lupus can be hard. Make sure to take time to rest when you can and take steps to manage your symptoms. Eating healthy food and getting physical activity are also important for self-care. So is doing things you enjoy such as journaling, reading, listening to music, or any other activity that you find relaxing.
- Talk to your doctor about a lupus flare plan. Your doctor and care team can help you figure out what to do if you think are having a flare. Writing down who to call and what to look out for can save you valuable time and help get your flare under control more quickly. Using this flare plan template can help.
When you have lupus, having a network of people to support you can make a big difference. You can look for support from:
- Your doctor
- Friends and family members
- Community or faith organizations
- Lupus support programs and groups
When you have lupus, it’s important to get support. Having a network of people you can rely on can make lupus much easier to manage and help you keep doing the things you love.