Friends & Family

There are many ways that you can support a family member or friend who has lupus.

Educate yourself about lupus.

One of the most difficult challenges for people with lupus is that their symptoms are not always visible. Lupus can affect the internal organs and cause pain in the joints and muscles, which may affect function, energy, and mood. By learning about how lupus can affect your friend or relative, you can better understand, support, and help advocate for their needs.

To learn more, visit ConquerLupus About Lupus.

Be a medical advocate.

Your friend or family member with lupus may ask you to help interact with their medical care team. Ways you may be asked to help include:

• Help with appointments. Accompanying your friend or relative as a trusted companion at appointments can help ease stress and provide reassurance. Here are a few ways you may be asked to help:

  • Bring the essentials:

    • Copy of the phone number for the medical team (in case you are delayed on the way or need directions)
    • List of medications and allergies
    • Think about what else they may need during the day, examples may include a bottle of water, a small snack, an extra sweater or jacket, any medications they may need.

  • Transportation. Learn about the route to take and allow for extra time in case of delays.

  • Parking. Some appointments are in big medical centers with parking far from the actual office. Read ahead of time about patient drop off locations and parking validation.

  • Navigation. Familiarize yourself with a map of the hospital or office if it is a large center. Having a copy of the map can be helpful, too.

  • Don’t mind the wait. There can be a lot of down time during appointments. Bring some entertainment or reading material.

  • Know your role. Ask your friend or relative if they’d like for you to speak during the appointment. Ask if they would like you to help provide any details or ask any questions on their behalf. You may be able to help provide notes about symptoms, a current list of medications, or questions about new treatments.

• Emergency contact. Your friend or relative may list you as an emergency contact.

• Health care proxy. Your friend or family member may ask you to talk with their care team by phone or through online messaging if they are unable to do so themselves. To do this, you will need to sign paperwork that allows you to communicate with the care team to provide healthcare information. Completing this paperwork before it is needed can save time later.

To learn more about healthcare visits for lupus, visit ConquerLupus Talking to Your Doctor.

Talk about their flare plan.

If your friend or relative is open to receiving help, ask them about what you can do when they are having a flare.

• Symptoms. Learn about what symptoms they typically feel with a flare and what they should do to help manage those symptoms.
• Triggers. Learn about the common triggers of lupus flares and ask them if they would like your help to avoid those triggers. For example, people with lupus should avoid too much sun exposure or prolonged periods of physical overexertion.
• Medications. If they are prescribed new medications during a flare, they may not be able to easily drive. Can you take them to pick up their medications or could you be listed at their pharmacy as an alternate person to pick up their medications?

To learn more about lupus symptoms, visit ConquerLupus Symptoms. To learn more about medications for lupus, visit Conquer Lupus Medications. To learn more about medications for managing pain, visit ConquerLupus Professional Pain Care.

Support their self-care journey.

There is a wide variety of self-care techniques that can help people manage some aspects of lupus symptoms. These self-care techniques can be used in combination with clinical care or on their own. To are several things that you can do to support friends and family members on their self-care journey:

• Ask them if they have any self-care goals related to relaxation techniques, nutrition, physical activity, or sleep.
• If they don’t have any self-care goals, you could ask them if they would like help setting goals or scheduling time for self-care during the week.
• Encourage the person on their journey by participating in some self-care activities with them such as going for a walk, playing with a pet, listening to music, or calling a family member or friend.

To learn more, visit ConquerLupus Self Care.

Caring for someone with lupus can be stressful and may affect your physical and mental health. For example, if the person you care for is your spouse or partner, the impact of their lupus symptoms may make it hard to sleep in the same bed.

Make a plan for how you can help the other person without losing control of your own life. You may want to try some self-care strategies for yourself. To learn more, visit ConquerLupus Self Care.

Cognitive skills are how your brain thinks, communicates, remembers, and solves problems. People with lupus have reported the following symptoms related to cognitive dysfunction:

• Short-term memory loss
• Confusion
• Forgetfulness
• Disorganization
• Difficulty concentrating
• Difficulty putting thoughts into words.

The key to maximizing memory is to keep a routine where things are constant and familiar. Any change in routine or familiarity will make it more difficult for a person with an impaired memory.

• Calendar:  Keep a large calendar in a central location of the house so that the person can look at it frequently (ex. kitchen).  Write important things on the calendar and have the person check it every day at a set time so that it becomes a routine. Try not to fill in the calendar with too much information, otherwise, it may become difficult to read.  If the person has difficulty keeping track of time, cross off the days on the calendar as they are completed.

• Review Daily Events:  Review activities of the day with the person at the end of the day or as often as needed (ex:  after each activity, after meals, at end of day, etc.)  Those with more severe memory impairments may find a list of routine day helpful. For example, post a daily schedule on their bedroom door, and post-it notes could be used for changes to the routine.

• Repeat Instructions:  When giving directions, have the person repeat to you what you just asked him or her to do.  It may also be helpful to limit the length of the direction (ex: Ask the person to do only one thing at a time.)

• Reminders:  Post reminder notes or objects to be remembered where the person will see them (ex: Post a note on the door saying ‘take out the garbage’ or ‘place the garbage can next to the door’).  It may be helpful to begin discussing an event several days in advance because repetition aids memory (ex. ‘In two days it will be our 25th wedding anniversary’).

• Memory Journal: Have the person keep a daily memory log and/or a personal journal in which he or she records daily events, things to do, accomplishments, feelings, etc. Journals may be any size; pocket-sized notebooks are nice for those who are active.

• Personal Items:  Put important things like keys, glasses, etc., in the same place all the time.  This makes items easier to find and they are less likely to be misplaced.

• Assistive Devices:  There are items available such as labeled pill containers and programmable phones that can assist a person who has memory impairment be more independent.  Timers or alarm clocks may also be helpful. For example, if the person likes to watch a TV program, set an alarm to go off just before the program begins. Watches and dates are also helpful for the person who has difficulty remembering the date.

• Good Communication Skills: These may aid the person’s memory by providing hints as you speak (ex: ‘You remember Jane and Bill’.) or emphasizing important points by repeating them more than once.  Please, however, do not quiz the person. Also, good communication will ensure that the person was paying attention and was able to hear the message. Try to:

  • Make sure you have the person’s attention.
  • Speak to each other face-to-face in good lighting.
  • Talk about important ideas in a quiet place (ex: turn off TV, wait until the grandchildren or friends are gone, etc.)
  • Discuss important ideas with the smallest number of people present as possible as it is often harder to hear or follow directions in a group.