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Jessica’s Coping with Lupus Corner

Being Prepared for a Lupus Flare

Jessica Rowshandel, M.S.W.
Jessica, Rowshandel, M.S.W.
Director of Social Services
S.L.E. Lupus Foundation

Lupus flares are disruptive and affect many different aspects of a person’s life. There are needs, large and small, that do not disappear. Instead, a flare makes taking care of daily needs much more difficult. Someone has to walk the dog, take the kids to school, pay the bills, buy groceries, and cook meals. While some of the chores might be optional, however, others are not. Maybe sometimes you are able to push yourself through the flare, but end up feeling worse. Other times, you may find that no matter how hard you try to push, you physically cannot do all the to-do’s on your list.

Planning ahead can help lessen the chaos a flare can cause. It takes some work upfront, but saves time, stress, and worry later.

Brainstorming Your Needs:

  1. List all of the parts of your life that are impacted by a flare. This should include home, job, volunteer work, school, community, and so on.
     
  2. From this list, think about your most essential responsibilities that need tending to when you are in a flare.
     
  3. Also think about what you can give up, things that can be put on hold during a flare.
     
  4. List helpful people in your life who can pitch in with some of these responsibilities. Helpful people can be friends, family, neighbors, or people from support group. Maybe a neighbor can help pick up your mail. Maybe a relative can help with meals. Maybe a support group peer takes you to a medical appointment. This is a good opportunity to talk about lupus with loved ones. Tell them that you are developing this plan and ask if they can be included. They might even have some helpful ideas you didn’t think of.

The three most essential parts of a flare plan are often medical, financial, and household needs.

  • Medical Needs: Keeping your medical information (healthcare providers, prescriptions, pharmacy, health insurance information, etc.) in one place is important because you might need it during a flare, and the less you have to go around looking for things, the better.  You should include names, addresses, phone numbers, email addresses, and account numbers. Everything should be in an easily accessible place, like in a document taped to the fridge or saved to your computer desktop. Consider sharing this document with a trusted love one in case they need to assist you with your medical needs.
     
  • Family/Household Needs:  What are the everyday responsibilities that must be taken care of? For example, if you have children, do they need someone to take them to school when you are in a flare? If you have a dog, someone needs to help you feed and walk him.
     
  • Financial Responsibilities: Keeping an organized list of your monthly bills and their due dates will help prevent missed payments because of a flare. You might look into setting up with your bank a free online bill pay service to pre-schedule all recurring payments.
     
  • Other Commitments and Important Contacts: It can also be helpful to keep a list of other commitments that you have outside medical, financial, and household. Are you employed or part of any groups in your community? Do you volunteer or keep any other regular appointments, like weekly psychotherapy? Are there other responsibilities you have that we didn’t cover? It is helpful to list all of these things, including contact information and any duties that you have.
     
  • Don’t Forget the Entertainment! It can be very frustrating to be stuck at home. What are some things that can bring you some joy during these times? Subscription services like Netflix, Hulu, or Amazon offer a variety of movies, documentaries and television shows for entertainment and learning. Music, books, and magazines can also be great companions. Or think about people you can call on for companionship either in person or on the phone. Flares can be lonely, otherwise.

 

The Plan:

Take a break.  You’ve done a lot of brainstorming and thinking.

The next step is to take all of this information and create a plan – to literally write or type it out. If possible, I suggest typing it because then it is easy to make changes to it. And if you have hand pain or stiffness, this is a great opportunity to ask someone to help you.

 

Sharing the Plan:

It is important to keep this plan in an easy to find place. But I also suggest sharing this plan with one or a few people who will be involved in helping you during a flare.  This way, everyone is equally prepared.

 

Feeling Prepared:

This plan should help you feel prepared, less helpless, and more empowered when a flare rears its head.  And it should help you feel a little more in control. Now that you have read about planning ahead and being prepared for a lupus flare, what are some things that you are thinking about including in your plan? Share your thoughts on your Facebook page.

Ask Jessica!

Disclaimer: This website and its contents are designed for educational purposes only. Jessica Rowshandel, MSW is the S.L.E. Lupus Foundation’s Director of Social Services. She is not a physician. The advice provided is for educational and informational purposes and the Foundation does not recommend or endorse any particular treatment or therapy. The information provided here should not be used for the purposes of diagnosing or treating a medical or psychiatric illness. It is not intended to be a substitute for professional care. Lupus is a very individualized illness; consult a healthcare professional before making any decisions about your care. If you have or suspect you may have a health problem, you should consult your health care provider. Telephone calls, emails, and online content do not constitute counseling services in any way. The S.L.E. Lupus Foundation does not provide any medical or psychological services to its patients and users. For an accurate medical or mental health evaluation, participants should seek an evaluation from a qualified healthcare professional. S.L.E. Lupus Foundation employees, consultants, and agents shall not be liable for any claims or damages, and expressly disclaim all liability of any nature for any action or non-action taken as a result of the information generated by the S.L.E. Lupus Foundation programs and its website, as well as the S.L.E. Lupus Foundation Facebook and Twitter pages.