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My Advice to Anyone Who Has a Loved One With Autoimmune Disease

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Autoimmune diseases are no picnic. I have watched someone I dearly love go through so much because of discoid lupus. Skin lupus. A disease that has reared its ugly head more than once and changed my mother’s world completely.

When I first started college, my mother’s skin began to turn beet red; itchiness began to be an issue, and mysterious lung ailments that dangerously lowered her oxygen level began to make themselves known. The doctors could provide no answers other than psoriasis. The lungs always looked perfect on x-rays. However, it was much later that we realized something more serious was upon us. The summer of 2014 was particularly terrifying for my mother; her health had been declining and these round and yellowish white dotted lesions began to appear on her body; itching became unbearable for her; the beet red skin had morphed into blotchy, purple skin with the texture of leather. The only highlight of that year was my college graduation. Seeing my mother struggle broke my heart.

A dermatologist trip and a biopsy later, she was formally diagnosed with lupus. I cannot imagine what was circling through her mind. I cannot imagine living a completely normal life, and then one day having it turned upside down. Life with cerebral palsy, being “different,” and having to adapt to everything around me is the only life I’ve ever known. Our struggles can’t compare.

What I would say to a loved one of someone who deals with an autoimmune disease is to not make it about you. Don’t say you understand it. Don’t tell them to “snap out of it.” Don’t complain when you have to be the nurturer. I don’t know what it’s like to have lupus. I don’t understand. My mother doesn’t understand my battles completely, but she loves me and supports me 100 percent. I do just the same for her; we are a team. Our mother-daughter bond is forever. Thanks to medications along with the occasional use of steroid cream, her lupus has gone into a sort of remission. She lost a great deal of her energy and slowly regained it back, and now has to try to avoid direct sunlight as much as she can.

My advice is to pray for your loved one and help them any way you can. I have applied sunscreen to my mother’s hands and arms as she was driving before. Don’t call them lazy. Mom has great days and bad days; that’s just the way it is. The most important thing is for her to have a support system. My biggest heartbreak comes from not being able to protect her from the enemy the sun is to her. My mother has defended and protected me a countless number of times; I want so badly to be able to return the favor. I look at the relationship we have and I see two people who both need and love each other immensely. I love my mom. She is my most treasured blessing. I hope she knows she’ll always have someone to lean on in me.

Originally published: November 11, 2016
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