‘My illness does not define my worth’

5 days ago 7

LEX-ANN MARTIN is a fighter, and on days when she feels fragile, she digs deep and finds the inner strength and determination to persevere. Martin was diagnosed in 2019, with lupus, an autoimmune disease that attacks your own tissues and organs.

Healthcare providers sometimes call lupus systemic lupus erythematosus (SLE). It is the most common type of lupus, and means you have lupus throughout your body.

For several years Martin had varying ailments including constant migraines, joint swelling, pain and stiffness, rashes in her hands, red eyes, blurry vision, rashes on her face and body, shortness of breath, rapid weight loss, hair loss, sensitivity to sunlight, constant dehydration, loss of appetite, little to no mobility with her body, stress, anxiety, depression, suicidal thoughts, and anger problems.

Martin listened to her body, and sought answers, as she had none of these symptoms in her teenage years, or any underlying conditions that would suggest, she had lupus.

There is no one first sign or symptom of lupus. The early signs and symptoms of lupus include extreme fatigue, joint pain, or a butterfly rash. However, the early signs vary widely from person to person.

The diagnosis for her was difficult, however, thankfully she was not a student at that time, and sought immediate support from her family and those around her who understood her situation.

“I am a person of faith, who finds strength in something greater than myself. Even when I don’t have the answers, I hold onto purpose. I am someone who still seeks joy, still finds beauty, still dreams. Even in the shadows, I look for the light. I am evolving. I am healing not always physically, but emotionally and spiritually. I am growing, even when it’s hard to see. I am still becoming,” Martin said.

After her diagnosis, Martin increased her awareness about the illness. She began tracking her fatigue, pain, and the things that would trigger her flares, including adjusting her lifestyle, diet and taking her medication on time.

“I disassociated myself from things and people that have a negative impact on my life. I have developed a strong mental resilience, and the ability to bounce back from stress or change. I have also cultivated a more positive mindset, coping mechanisms, practise more self-care and setting meaningful goals,” Martin said.

FOCUS ON MANAGING SYMPTOMS

Anyone can develop lupus; however, certain people are at higher risk for lupus, including women ages 15 to 44, certain racial or ethnic groups, people who are of African American, Asian American, Hispanic/Latino, Native American, or Pacific Islander; or people who have a family member with lupus or another autoimmune disease.

“I have become more accepting that I am not just someone with lupus, but someone living with purpose despite it. Some relationships have deepened with increased support and some have faded,” Martin said.

Lupus treatment focuses on managing symptoms, preventing flares, and minimising organ damage through medication and lifestyle adjustments, as there is no cure.

Medications, particularly antimalarials like hydroxychloroquine, nonsteroidal anti-inflammatory drugs (NSAIDs), corticosteroids, and immunosuppressants, are used to control inflammation and suppress the immune system. Lifestyle changes, such as avoiding sunlight, managing stress, and maintaining a healthy diet, are also crucial for managing lupus symptoms.

“Treatment is very expensive; however, my health card and National Health Fund (NHF) card play a huge part with lessening the expense. Also, I recently learned about this government place that takes my type of prescriptions, that is now saving me thousands of dollars,” Martin said.

Martin said she has tried to live a more meaningful life, despite her lupus diagnosis. “I try to be present for the people I love. I honour the strength I have already shown, and demonstrate to others that my illness does not define my worth,” she said.

She looks forward to listening to her favourite songs, that lift her spirit, a well-cooked meal, and a quiet moment in prayer. On rough days, she lowers the bar, and focuses on small wins.

“I remember what I have already survived. I have been through flares, pain, disappointment, and uncertainty and I am still here. I keep a mental (or literal) list of the days I thought I would not make it but did,” she said.

keisha.hill@gleanerjm.com

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