Lupus – short for systemic lupus erythematosus – is a chronic autoimmune disease that occurs when the body’s immune system attacks its own healthy organs and tissues.
It can take years for lupus to be diagnosed as it is often mistaken for other illnesses. Symptoms tend to be non-specific and vary widely, such as fatigue, joint pain, swelling, fever, and rashes – especially what is commonly called a “butterfly rash”, which stretches across both cheeks and often looks like a sunburn.
The inflammation caused by lupus can harm the patient’s kidneys, skin, joints, blood cells, lungs, brain and heart.
Sara (not her real name) woke up one morning with muscle aches, feeling really tired. She thought she would wait a few days for it to go away, but the aches didn’t subside. When she had difficulty lifting her arms, she decided to take some time off work to rest.
After her symptoms improved, she returned to work and her usual routine. After a few weeks, however, her joints began to hurt and she developed a mild fever.
Concerned, her doctor referred her to a rheumatologist and, following several blood tests, she was diagnosed with lupus at age 25.
Family support and self-love
Initially, Sara felt a sense of shame and despair; she thought the condition had pulled the rug from under her feet and stolen her life.
But her path towards acceptance soon became clear – she has lupus, but lupus doesn’t have her.
After starting on medication, the aches and pains subsided and her stamina improved. She never looked sick and didn’t allow people to feel sorry for her despite developing Sjogren’s syndrome – dry eyes and mouth – which made it difficult for her to eat certain foods.
She needed to apply lubricating eye drops, as well as take sips of water regularly. She also had difficulty swallowing, and her sense of taste was slightly altered.
Her biggest source of support came from her family, who reminded her of her strengths when she shut herself from the world in the early stages.
Today, Sara has found new insight and strength from having lupus, and is grateful to be living the life that she is.
Planning, she says, is key to getting through the day. She always allows for periods of rest in case she gets a flare-up and her day is disrupted.
Planning around her condition can get her down, but she has accepted she needs to be positive and carry on.
The severity of her condition has fluctuated over the years, and she has to deal with joint and muscle pains that cause tiredness. But she’s learnt to cope by helping herself as much as she can, which has allowed her to gain independence and more control over the condition.
Sara is sharing her story for those on a similar path. While the lupus journey can be full of difficulty and disappointment for the sufferer and their loved ones, taking time to practise self-love and positive affirmation can only lead to healing.
TELEME Healing Life Stories is a collection of inspirational stories of how ordinary people triumph over their health conditions and recover to lead a healthier life after that. Feel free to email [email protected] to share your story.
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