Living with lupus
A diagnosis of lupus has a profound impact on your life.
Some patients learn the art of living known as ‘carpe diem’.
People with lupus are faced with a chronic condition that is often invisible and little understood. They frequently experience pain, severe tiredness (known as fatigue) and other debilitating symptoms. The unpredictability of the disease’s progression can be very stressful, and many sufferers are dependent on medication for the rest of their lives.
At the onset of the illness, it is natural to want to fight against these challenges and to resist the illness. Over time, however, those affected learn how to lead a positive life despite their illness. They set new priorities and discover unexpected resources.
Learning to accept the new situation
To come to terms with the situation psychologically, it is very helpful to gradually develop a ‘friendly relationship’ with the illness. This is usually a long and challenging process.
Those affected learn to adapt their lifestyle to live with lupus. Some activities are no longer possible, but others can be found that are just as enjoyable.
Coming to terms with the condition means finding out as much as you can about lupus. After all, the better people with lupus understand their condition, the more effectively and independently they can manage it.
The support and sense of security provided by the family, as well as understanding from the wider social circle – particularly from friends and colleagues – are also a great help.
Some people affected by this learn the art of living known as ‘carpe diem’, which focuses on consciously savouring the moment.
The Spoon Theory
Christine Miserandino’s essay ‘The Spoon Theory’ powerfully conveys what it means to live with lupus and the impact the condition has on daily life. The Spoon Theory, with its 12 spoons (representing units of energy) per day, helps those not affected by the condition to better understand what daily life with lupus is like, particularly the severe fatigue and rapid exhaustion.
Many people with other chronic conditions now use the ‘spoon theory’ to explain the difficulties they face in their daily lives. For example, those affected by Long Covid use it to describe their fatigue in a vivid and easily understandable way.
Healthy eating
Unfortunately, there are no foods that can cure lupus. However, an anti-inflammatory diet can help with chronic inflammation.
Mediterranean cuisine, for example, is often recommended. However, people with lupus should avoid nightshade vegetables (potatoes, tomatoes, aubergines, peppers).
Individual food intolerances (e.g. gluten, lactose) can also be identified. Nutritional advice can be very helpful at the start.
The magazine *lupus* often features simple recipes that don’t take much effort to make.
Exercise to combat fatigue
According to clinical studies, moderate exercise can be effective in combating lupus fatigue. Lupus Europe has developed the ‘Lupus Europe Exercise Programme’ in collaboration with people living with lupus and specialist physiotherapists. It includes exercises of varying levels of difficulty that you can do in bed or on the floor, on a chair or standing up. The videos feature people living with lupus, not athletes or fitness coaches.
LUPUSLOG – Your diary app
The Lupus Log app is designed for patients with systemic lupus erythematosus (SLE). The app helps users keep an interactive symptom diary, which can serve as a valuable basis for discussion during their next doctor’s appointment.
Export functions
The PDF export function allows you to save and archive your personal diary entries. All data can be exported as a PDF file and sent by email, for example.
Developer: GlaxoSmithKline PLC
Diary functions and trend graphs
Thanks to its intuitive user interface, simple icons and clear graphics, the diary is easy to use. You can compile a list of the personal symptoms you wish to track or those you have agreed with your doctor. This gives you and your doctor a clear overview of changes in your health in relation to your general well-being.