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Letting Go of a Grown Daughter With Lupus

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Every day when I wake up, I wonder about my daughter, Meredith. I wonder how she's feeling today, if her shoulders hurt, if her fingers are swollen, if she can put her rings on them. She was diagnosed with lupus when she was 19 years old, and even though she's now 25 and married, I still wake up wondering.

After Meredith was diagnosed, I was shocked. I didn't know anyone who had lupus, and no one in my family's history has had it. I didn't believe it at first. When I finally accepted it, I knew it would be a life changer. As is the norm now, the first thing I did was to go online and try to research the illness. That, I've learned, is the worst thing you can do. Lupus is what they call a "snowflake disease:" no two people with lupus will have the exact same symptoms. It is also called the great masquerader. Going online provided me with a lot of information that I wasn't sure was relevant to Meredith's situation. It scared me. If all you do is go online, you might as well pack it up, go to your room, and wait until the Lord takes you, because it's not going to help you at all.

Letting Go as a Lupus Caregiver

The best information I received was from the Lupus Foundation of Pennsylvania, located in Pittsburgh. After I contacted them, they sent me clear and precise information. They provided me with percentages: the percent of lupus patients taking steroids, the probability that the lupus will affect a patient's organs, the percent of women with lupus who miscarry in the first trimester, etc. Their brochures gave me much more factual knowledge than most of the stuff on the Internet, which was too general and not very helpful.

Learning to Set Boundaries

I've learned a lot as I've tried to take care of my daughter. It's been hard, because she was diagnosed when she was away at college, so for that period of time I worried that she wasn't taking care of herself. The college lifestyle is exactly the opposite of what a lupus patient needs. Meredith can't stay out late, can't drink too much, can't sit in the sun on spring break, can't eat junk food all the time. She has a strict diet and exercise regimen and she needs to stay rested and out of the sun at all times. It killed me when she was at college, because she was so reckless. I'd try to stay in touch with her as much as possible- we'd talk almost every day and we'd text and email – anything so that I knew as much as possible about how she was doing.

After graduation, when Meredith moved back home, it was still a struggle. She wanted to go out with friends at night and it worried me that she wasn't resting. She'd go to concerts in the sun and I'd be concerned about her skin. Her answer was always the same: Mom, I can take care of myself. It caused a lot of friction between us.

Now that Meredith is married and living an hour away with her husband, I'm trying to let go. I will say that she has been very kind- she lets me nag and show my concern. She listens to my advice, and then always tells me that she'll be okay. I'll admit, I'm pretending to let go. I haven't fully separated myself from my role as caregiver. Sometimes I circumvent – I tell my husband, her brother, or her husband to mention something to her. Once she moved out, I knew it was going to be up to her to take account of the past few years and take them with her. I'm trying to trust that she'll wear her 30 SPF and get out of the sun every 30 minutes. At 19, she was extremely resistant, but now, at 25, I think she finally understands.

How a Caregiver Copes With Lupus

I don't see myself as a strong person. I think that if I were strong, I'd be more willing to immerse myself in the world of lupus. I'd have joined support groups and foundations. I handle it the best way I can, and that is to share it with really good friends and family. I talk to people who I know will be positive and uplifting. Lupus is only a portion of who Meredith is – it doesn't define her. It's just a disease that she's been diagnosed with. As a caregiver, I've had to come to terms with the fact that I can never really know what it's like. I can never truly understand the pain she experiences and how much of her life is impacted by this disease. I can look at her and feel bad and try to make her life easier, but I'll never really know how much pain she's in.

Meredith is a beautiful girl and people think she's got everything. But how she looks on the outside can be the opposite of how she feels on the inside. That's another problem with lupus- you don't always look sick, like someone who's losing hair or becoming emaciated. Lupus is an invisible disease, but it's a real one. When people see Meredith looking perfectly normal, it's easy to think she's exaggerating about her pain. But it is real.

I think, because most lupus patients look relatively normal, public awareness of lupus is lacking. People have heard of it but aren't exactly sure of what it entails. The problem is, lupus is not a new disease. It's been identified by doctors for more than fifty years, but the treatment has remained the same. The first new drug to treat lupus in more than half a century finally gained approval from the FDA about a year ago. I hope that as more people are exposed to this disease, there will be more pressure put on pharmaceutical companies to find alternate treatments and/or a cure. When Meredith has a flare, her doctor immediately turns to steroids, which she doesn't want to take. We need more research to be supported and more medication options to be developed.  Right now, Meredith's lupus is fairly mild, but that could change at any moment. I hope more than anything that there will be a cure in her lifetime.

Marie Rich is the mother of a grown daughter, Meredith, 25, who was diagnosed with lupus five years ago. She is also mother to Cameron, works as a realtor and lives in Peachtree City, Georgia, with her husband, Paul.

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