lupus guide
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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.

Seeking a Diagnosis

It may take some time for a patient to be definitively diagnosed with lupus. During this time, patients may be confused or frustrated by the seeming inability of the doctors they visit to confirm the diagnosis. They may ask, “Why don’t the doctors know?” Part of the difficulty, both for the patient and the doctor, rests in the fact that the diagnosis may seem to be hiding in a forest of confusing, vague, or changeable symptoms. A patient may express some of the following sentiments or frustrations:

“My symptoms are bizarre – they’re here today and gone tomorrow.”
“I can’t put a handle on my symptoms. I’ll have one today and a totally new one tomorrow.”
“No one seems to believe me. My family thinks it is all in my head and they want me to see a psychiatrist. I am beginning to wonder if it is all in my head.”

Before a diagnosis is made, many of a patient’s primary needs are emotional. A lupus patient will, in all likelihood, be on intimate terms with her or his symptoms long before their cause is known. Realistically, she or he is the best authority on these symptoms. A patient may feel frustrated if, after describing symptoms, others do not respect her or his knowledge or do not share the conviction that something is wrong. If the doctor, family, or friends are unsupportive, the patient’s fear, anger, and sense of isolation will only increase. These feelings add stress, which in turn can exacerbate the disease.

After the Diagnosis

Patients will certainly experience a sense of relief once their condition is finally given a name and a tangible identity. At the same time, other emotions – anger, fear, depression, confusion, grief – may also surface. Patients may express some of the following sentiments:

“At last – a diagnosis! Now I know why I feel the way I do.”
“Why me?”
“I’ll never be able to make plans, because I don’t know what tomorrow will bring.”
“I feel guilty for having lupus and for all the trouble it’s causing my family.”
“Should I tell everyone or keep it quiet?”
“Will I lose my job?”
“I hate this disease. It’s destroying my life and my family.”
“I’m scared.”
“Will I die soon?”
“Will I ever be able to have children?”
“How will we pay all these medical bills?”

After the diagnosis, some patients will have an insatiable desire for information about the disease; others may need to work through intense emotions before they can come to grips with their illness and begin to cope productively.

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. Well-established 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?”

lupus issues

 

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