Coping with Lupus
Coping with Lupus
Lupus can be a very unpredictable illness, which is one of the reasons that it is so hard to live with. You may wake up feeling really good, but by mid-afternoon, be back in bed feeling pain, nausea and fatigue. As a result, it can be difficult to plan ahead and make commitments, which adds to the frustration of having a chronic and painful illness.
In this section, we provide some tips on things that you can do to cope with lupus on a day-to-day basis.
It is important for lupus patients to arm themselves with good quality information about their condition. This can sometimes be easier said than done, because a lot of the information on the internet is outdated, and provides an overly bleak view of life with lupus. Rheumatology units will often have a library containing leaflets with up-to-date information on the condition. Also, major lupus organisations (e.g., Lupus UK, Lupus Foundation of America), have good quality information on their websites. Here are some suggestions about reading material that we have found helpful:
- The First Year Lupus: An Essential Guide for the Newly Diagnosed – Nancy C. Hanger
- Talking About Lupus: What to Do and How to Cope – Triona Holden
- The Lupus Book – Daniel Wallace
- Coping with Lupus: A Practical Guide to Alleviating the Challenges of Systemic Lupus Erythematosus – Robert Phillips
Lupus can be a lonely condition, and having the support of others can make a huge difference to how a patient feels. Ideally, it is wonderful when family and close friends can provide support to patients, perhaps by accompanying them to appointments, taking a genuine interest in how they are feeling, and making it clear that they understand when their family member or friend needs to cancel something at the last minute because they are not well.
Patients may also find it really helpful to connect with others who have the same condition, for example, by joining local support groups, and online forums such as the one on this site! join our online community
It is essential for lupus patients to take extra care with sun protection. Even short periods of sun exposure can make a lupus patient feel very unwell. It is therefore necessary to avoid the sun in the hottest parts of the day, to wear sun block all year round, and to wear sun-safe clothing (such as a hat, and UV-protective clothing).
Although it is hard to exercise when you feel exhausted, exercise can play an important role in coping with lupus and keeping the muscles and joints healthy, not to mention improving your state of mind! Swimming is particularly good, as it helps to maintain muscle integrity and to build muscle mobility and tone, without placing undue stress on the joints. It is important to check with your doctor before embarking on an exercise routine, and also, to take particular care during a flare. But, as a rule, in most lupus resources there is a section in which the importance of exercise in disease management is emphasised.
Lupus patients should follow national nutrition guidelines in maintaining a healthy and balanced diet. Some patients report improvements when they cut out certain foods such as red meat and wheat, but the evidence is fairly anecdotal. In a number of resources, patients are advised not to eat alfalfa sprouts which can induce a lupus-like syndrome or lupus flare, perhaps because they contain the amino acid L-canavanine, which can activate the immune system and increase inflammation. Patients should speak to their doctor before altering their diet or introducing any herbal or natural medicines.in most lupus resources there is a section in which the importance of exercise in disease management is emphasised.
As much as possible, it is important for the lupus patient to avoid stressful situations. The role of stress in lupus is at least two-fold; many patients report that a stressful event precipitated their lupus, and many patients report that stressful events trigger flares of their existing disease. It is impossible to avoid stress altogether, but where possible, the lupus patient should aim to reduce stressors, for example, by planning ahead and seeking support where necessary. Adequate rest may also reduce the impact of otherwise stressful situations.