How to cope when living with lupus

It's not always visible to others, but lupus is difficult to live with. Here's what you need to know.

04 March 2015
by Ruth Rehbock

It’s not easy living with the chronic condition lupus. Not only does it have a psychological impact on sufferers and their families, sufferers also have to contend with side effects from medications that treat it.

Physiologically, this autoimmune disease can be associated with pain and fatigue symptoms, and it may have an impact on your ability to work and do everyday activities.

“It may be hard to adapt to this way of life and can lead to patients feeling frustrated and unable to do anything about it. This puts patients at risk for feeling helpless and hopeless which are typical symptoms of depression,” says Tamara Zanella, a counselling psychologist based in Johannesburg.

“The other big issue is that the disease may not be visible to others, so people may doubt the veracity of the illness which can lead to anger and resentment in the patient.”

Managing with the meds

On the other hand, corticosteroids used in treating lupus can cause visible weight gain. They can also cause various rashes or ulcers, such as Raynaud’s Syndrome, a blood-flow condition associated with lupus which can cause a change in skin colour in the extremities. These side effects can cause insecurity, self-esteem issues and depression in the patient, Zanella says.

The disease and its medication can also result in cognitive dysfunction such as forgetfulness and difficulty making decisions, adding to the frustration of pain, exhaustion and emotional issues.

Take good care of yourself

Zanella also explains that patients with lupus are susceptible to feelings of anxiety and depression so it is important that their mood is managed effectively. “Patients must get enough rest and must eat healthy, regular meals, as all of this will assist in maintaining the stability of their mood as well as their physical well-being.”

One of the biggest risks for depression is chronic pain so this is something lupus sufferers need to actively work on in order to cope. Medication, yoga, hot baths and in some cases acupuncture or seeing a chiropractor can help. Lupus sufferers must make sure all the professionals involved in their care are aware of their treatment plan and can work together to facilitate the most effective plan.

“If patients are feeling overwhelmed, tearful or agitated, helpless or even hopeless, they may well be suffering from depression and they should seek assistance from a mental health practitioner for individual therapy,” she adds.

Family therapy can also be useful to help your partner and/or family understand how the chronic condition is affecting you – both from a physical perspective and a psychological one. It can also enable family members to share their concerns with you and promote an open dialogue that will benefit both you and your support.

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