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SOURCE: National Institutes of Health, U.S.Department of Health and Human Services: Link to NIH
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Living with Lupus: Key Issues

Every day, the patient living with lupus confronts a range of issues, from the emotional reactions of a spouse, children, or work colleagues to her or his own fluctuating physical and psychological state. The thoughtful and sympathetic health professional can contribute greatly by helping the patient see these issues objectively, understand that they will come and go over time, and develop effective coping skills.

Family Issues

One of the most important emotional issues that people with lupus grapple with is the ongoing and changeable reactions of those closest to them: parents, a spouse, or children.

Understanding family dynamics can help the health professional work with the patient to develop positive coping strategies.

Parents

Parents of a lupus patient may react by smothering or – the other extreme – by not taking the disease seriously.

Because lupus may be genetic, some parents may feel guilty for having “given” their child the disease. The patient may hear sentiments such as:

“Oh, my poor baby, let me take care of everything.”

“Don’t make such a big deal of it. Just shake it off.”

“If it’s genetic, I must have given it to you.”

Spouse or Partner

A spouse or partner often experiences many of the same strong emotions the lupus patient does.

Grief, fear, and anger are common emotions for spouses or partners as they deal with the patient’s changing physical condition. Wellestablished roles and responsibilities within the family may change, leading to confusion or conflict.

These changes and feelings can affect the daily workings of the relationship, even threatening its foundation:

“I want you to get well. I want you to be the same as when I met you.”

“I’m afraid you will die and leave me and the children.”

“I’m confused. Our roles keep changing, and then changing back.”

“It’s hard doing my job and yours, too. I’ll never learn how to do the work around the house well enough to suit you.”

“I’m angry that you feel sick all the time and can’t do what you used to. I feel guilty for being angry.”

“Lupus has damaged our sex life. You’re always too tired, and I’m afraid I’ll hurt you.”

“I need to mourn our losses, too.”

Children

It is difficult for the children of a lupus patient to deal with the large and complex issues raised by having a sick parent.

Some of these issues are tangible, whereas others are scary precisely because of their abstract, unknown nature.

Because younger children have difficulty articulating their feelings and concerns, these emotions may go unnoticed or may be acted out in negative or disruptive behaviors. Older children with younger siblings may feel resentment as well as concern.

Children’s fears and feelings may emerge in statements such as:

“We never play anymore because you’re always tired or sick.”

“Is something terrible going to happen to you? Will you go away forever?”

“You’ve denied me my childhood. I don’t want to be responsible for my little brother all the time.”


The Patient’s Own Physical and Emotional State

The physical repercussions of lupus, such as fatigue, weight gain, or an increased sensitivity to sunlight, can trigger intense emotional reactions.

The following sentiments illustrate some common physical and emotional experiences of people with lupus:

Fatigue

“Nobody understands how it feels to be this tired.”

“I feel like I’m trying to move through molasses. Even my bone marrow feels tired.”

“No matter what I do or how much sleep I get, I still wake up tired.”

“Between pain, stiffness, and fatigue, I feel like an old, old person.

Personal Appearance

“Why do I look so awful? I don’t even look like myself.”

“I don’t want anyone to see the rash on my face.”

“I used to have beautiful thick hair.”

“I hate the fact that I eat so much, but this medicine makes me hungry all the time. I keep gaining weight.”

Physical and Mental Abilities

“I’ve always loved sitting out in the sun. Now I can’t anymore.”

“I can’t do the outdoor recreational things I used to do. I feel I’m letting my family down by not being able to play outdoors with them.”

“Does anyone else have memory lapses? I’m afraid something terrible may happen because I’ll forget something really important.”

Depression

“I’m always on the verge of tears.”

“I don’t want to leave the house.”

“I can never make plans, because I don’t know what tomorrow will bring.”

“Sometimes I think my family and friends would be better off without me.

The Future

“I’ve taken too much sick leave at work.”

“Should I tell my boss I have lupus? I’m afraid I’ll lose my job, and we really need the money.”

“Will I pass the disease on to my children?”

“What will happen as I grow older? Am I going to die from this disease?”



Source: National Institutes of Health, U.S.Dept of Health and Human Services


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