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Liv­ing with Lupus

A lupus dia­gnos­is can change life significantly.

Some patients learn the art of liv­ing by “carpe diem.”

As someone affected by lupus, you are faced with a chron­ic ill­ness. The dis­ease is often invis­ible and little known. Pain, severe tired­ness (so-called fatigue), and oth­er debil­it­at­ing symp­toms fre­quently occur. The unpre­dict­ab­il­ity of the course of the dis­ease can be very stress­ful. Many of you are depend­ent on med­ic­a­tion for life. 

At the begin­ning of the ill­ness, it is under­stand­able to fight against these lim­it­a­tions and to reject the dis­ease. Over time, how­ever, you learn how you can shape your life pos­it­ively des­pite the ill­ness. You set new pri­or­it­ies and dis­cov­er unex­pec­ted resources. 

Learn­ing to accept the new situation

For psy­cho­lo­gic­al cop­ing, it is very help­ful over time to enter into a “friendly rela­tion­ship” with the ill­ness. This is usu­ally a long and demand­ing process. 

You learn to adapt your life­style to lupus. Some activ­it­ies are no longer pos­sible. You can find oth­er activ­it­ies that provide just as much joy. 

Enga­ging with the dis­ease means inform­ing your­self well about lupus. The bet­ter you under­stand your ill­ness, the more com­pet­ently and inde­pend­ently you can deal with it. 

Sup­port and secur­ity with­in the fam­ily are also a great help. Under­stand­ing through­out your entire social envir­on­ment is import­ant. Under­stand­ing among friends and in the work­place is par­tic­u­larly crucial. 

Some affected people learn the art of liv­ing by “carpe diem,” in which the mind­ful enjoy­ment of the moment is central. 

The Spoon Theory

The text “The Spoon The­ory” by Christine Miserandino vividly con­veys what it means to live with lupus and what con­sequences the dis­ease has in every­day life.

The spoon the­ory with the 12 spoons fig­ur­at­ively rep­res­ents units of energy per day.

 It helps those not affected to bet­ter under­stand daily life with lupus. Above all, it makes the severe fatigue and rap­id exhaus­tion under­stand­able. Mean­while, many people with oth­er chron­ic ill­nesses use the spoon the­ory to explain their dif­fi­cult daily lives. For example, those affected by Long Cov­id use it to explain their fatigue in a vivid and easy-to-under­stand way. 

Healthy diet

Unfor­tu­nately, there are no foods that can cure lupus. How­ever, an anti-inflam­mat­ory diet can help with chron­ic inflammation. 

Medi­ter­ranean cuisine is often recom­men­ded. How­ever, people affected by lupus should avoid night­shade veget­ables (pota­toes, toma­toes, egg­plants, peppers). 

In addi­tion, indi­vidu­al intol­er­ances (e.g., glu­ten, lactose) can be assessed. Nutri­tion­al coun­selling can be very help­ful at the beginning. 

The magazine “lupus” often pub­lishes a simple recipe that requires little effort.

Exer­cise against fatigue

Accord­ing to clin­ic­al stud­ies, mod­er­ate exer­cise can be effect­ive against lupus fatigue. Lupus Europe has developed the “Lupus Europe Exer­cise Pro­gram” togeth­er with affected people and spe­cial­ised physio­ther­ap­ists. It includes exer­cises at dif­fer­ent levels of dif­fi­culty that you can do in bed, on the floor, on a chair, or stand­ing. In the videos, you will see people affected by lupus—not ath­letes or fit­ness coaches. 

Go to the videos