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Living with Chronic Illness (StoryMoja Event Highlight) By Carolyne Mutisya

Acceptance. That was what echoed when three ladies living with chronic illnesses shared their stories at the Storymoja Festival. At glance, they look stunning that you wouldn’t even know that they are ill. When they start to narrate their story, I am tempted to get sucked into the abyss of pity. However, their strength and positivity quickly pulls me back and makes me see them in neutral light.

Julie Muriuki, one of the speakers who suffers from three chronic illness, fibromyalgia, chronic fatigue syndrome and chronic migraines quickly points out that she had to ‘make peace with her body’, and adds that “I am not my body.” Lea Kilenga, born with sickle-cell anaemia and Natasha Muloko living with lupus for 10 years now quickly concur with that.
Fibromyalgia is a condition characterized with musculoskeletal pain which is accompanied by other symptoms including fatigue, tension headaches and memory loss. The widespread pain is felt in at least 6 of 12 areas in the body. Women are 10 times more likely than men to acquire the disorder.

Sickle cell disease is an inherited condition where the red blood cells are shaped abnormally (sickle-shaped), and this means that they don’t last long as normal shaped red blood cells which leads to anaemia. The sickle cells also get stuck in blood vessels, blocking blood flow, and this can cause pain and organ damage.

Lupus is an autoimmune disease that affects many parts of the body. There are different kinds of lupus, but they all occur when your body’s autoimmune system attacks your own tissues and organs. This causes inflammation to different parts of the body including joints, kidneys, liver, skin, blood and heart.

All sitting cross-legged and facing the audience that had gathered to hear their stories, they ooze strength that you would think that they are not battling with a chronic illness. Although they suffer from different conditions, the challenges they have had to face due to chronic illness related. All of the three found it difficult holding down a job, and all have veered into self-employment.

Lea Kilenga, a storyteller, advocate and entrepreneur recalls when she lost her job in early 2013 because of the numerous times she skipped work due to fatigue, a major symptom of sickle cell anaemia “Most people will not be keen of employing people like us,” she adds. When Julie suffered two major heart attacks in the same year, she knew that she wouldn’t be able to keep up with a desk-job and she opted to writing and business.

“It was a relief when I was diagnosed with Lupus,” says Natasha to my surprise. “I found peace after my diagnosis,” she adds. After three weeks of testing, she was finally diagnosed with lupus. Lupus, like most chronic illnesses are difficult to diagnose. The minimal medical expertise in such diseases in Kenya, and the lack of awareness make it even harder for those living with chronic illness to find quick solutions, and sometimes acceptance. However, being aware on oneself and maintain a positive mind frame is very crucial to those living with any chronic illness because they can manage their condition better.

Support systems, such as friends, family, support groups and God are also what the speakers pointed out as something very important to them. Acceptance has also made them manage their condition and outlook on life, as they all lead a normal life. They encourage those living with chronic illness that there is life after a diagnosis and that they should talk about their condition to raise awareness.

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