Living well with lupus

As a caregiver, how do I handle the unpredictability of lupus?

Lupus is a disease of flare and remission, meaning that disease may be active one day and quiet the next. Usually flares last more than a day, and usually an increase in medication dose, or a change of medication, will be necessary to suppress the symptoms.

Due to the unpredictable nature of lupus you may need to adjust your responsibilities and priorities at times. Neither you nor your loved one with lupus should feel guilty about these disruptions to activities that you cannot control, but it is important to find strategies to cope.

In order to prepare for unpredictability it is important to build a contingency plan in addition to communication, smart planning, and strong disease management skills.

Educate

  • Understand and accept the unpredictable nature of lupus.
  • Explain lupus to your support system of family, friends, and co-workers so they are aware how this can translate into changes in plans and daily activities.
  • Provide your support system with educational materials and trustworthy websites on lupus; these efforts will allow them to understand the disease and how they can help.

Communicate

  • Get to know the point of contact for each physician who treats your loved one for lupus and any related health complications. This will help you keep in regular touch with them and will help in case of an emergency.
  • Be sure your support system knows about changes in your loved one’s health status, perhaps through a website or email thread, so that you can efficiently update everyone.

Prepare

  • Schedule home delivery of groceries to ensure there is food in the house when you cannot make it to the store.
  • Arrange for medications and other supplies to be delivered from the pharmacy so that no prescriptions lapse, and your loved one always has the necessary supplies without you having to go get them.
  • Have a babysitter or house-sitter on call to look after children and household responsibilities in case of an emergency.
  • Establish a carpool group to make sure younger family members can continue to participate in their regular activities.
  • Educate yourself about the disease to better understand what situations or triggers have led to a flare in the past.
  • If you are employed at an office job, try to bring home important documents you are working on, and if possible, arrange for remote access to your work computer system. This will allow you to stay connected in case your loved one with lupus needs you to stay home with them or needs to be taken to an unexpected appointment.
  • Help your loved one to keep a list of current medications, laboratory test results, physician contacts, and emergency numbers. See the article on Emergency Preparedness for specific tips and suggestions.
  • Encourage your loved one, based on their age and health status, to engage in proper self-care and disease management skills. This can mean better awareness of their lupus and a more effective tracking of symptoms in times of flare.

Medically reviewed on August 15, 2013