What To Do When a Loved One is Diagnosed with Lupus

Autoimmune diseases are no picnic. I have watched someone I dearly love go through so much because of the nightmarish 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 on her body these round and yellowish white dotted lesions began to appear; itching became unbearable;  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 suffer broke my heart. A dermatologist trip and a biopsy later, she was formally diagnosed with lupus. As someone who knew of two family members who had passed away due to complications of the very same illness, I went to pieces because I automatically associated lupus with death. 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 don’t even come close in comparison. 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%. I do just the same for her; we are a team. Our mother daughter bond is forever. Thanks to medications such as, Plaquenil twice a day, Doxepin at night to help the itching, 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; apart from having to try to avoid direct sunlight as much as she can, she’s pretty much returned to being the woman I have always admired most. Just 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 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.

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    Brian Collignon

    11/14/2017 at 1:44 am

    Thanks so much I have just started dating a woman with lupus. We started dating a couple months ago. For the last couple day things turned upside down. She had told me about her lupus but I did not do my research on it, she had to go on steroids for a sinus infection she has been battling. I was blind sided with a huge turn in personalities. trying to stay positive. Nothing worked and she would not talk to me but give me a lot of negatives. We talked and she brought up the lupus and steroids again so to understand better I started my resreach with lead me here. Your article was enlightening. I understand how some of my words were took so wrong and the wiser way to approach any flair up in the future. It hard to find info on how to be there for someone with lupus. Not that it is a easy task but going to do way more research into how to help her with more day to day support. Thanks again

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