| 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 lupus patients 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 lupus patients:
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?”
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