Dealing with Family Members*
When a person we care about becomes ill, we worry
about the person and try our best to make the person feel better. When
a loved one has a chronic illness, it becomes frustrating because we are
not able to make the person feel better. Many people with chronic illnesses
have told me that they have had difficulties dealing with family members
and trying to get them to understand what is going on. I believe that one
of the first steps in improving the way you and your family cope with your
chronic illness is examining the role that you are playing in all of this.
Try to find the role that best describes how you usually deal with your
chronic illness in the sections below.
"I
don't talk about my illness or how I'm doing"
"I try
to keep my family informed of how I am doing on a daily basis"
"I will
often lie and say that I am doing fine when I am not"
"I don't
need to tell my family how I'm doing because they always can tell"
"I don't talk
about my illness or how I'm doing"
Many people avoid talking about their
illness because they do not want to upset family members or have their
health become the only topic of conversation. Also, many people with a
chronic illness will avoid talking about it with the hope that if they
do not talk about it, it will go away.
Problems with this approach:
-
Family members will be aware that you are having "bad days" and will
worry and become upset when you do not talk to them about it.
-
Hoping that the illness will go away if you do not talk about it usually
means that you will not try anything to cope with having the illness.
-
If you do not talk about the illness, you will not be able to educate
family members. As a result, people will either assume that you are not
having any problems, or they will do things that annoy you as they try
to figure out how best to help you.
Suggestions:
-
You should try to work on occasionally discussing issues about
your illness with family members. First, talk to family members that you
think will listen to what you have to say because you will probably feel
uncomfortable doing this (it's a change and change makes us feel uncomfortable
-- even if we think the change is positive). If you try this, focus your
discussion on the following:
-
If you have "bad days" (i.e., days where your symptoms are worse), tell
family members this and how best they can help you.
-
If your "bad days" are unpredictable, inform people of this. We all
have a tendency to assume that people who cancel plans at the last minute
either had no desire to spend time with us or that they are too "unpredictable"
and can't be counted on. The result will be that you are not invited out
as often.
-
Inform family members about how they could best help you. Here are some
examples of "tasks" you can assign to family members so that they feel
like they are helping you in some way:
-
Give someone the assignment of finding out information about your illness
-- they could search the web or the library.
-
If people are telling you that you are doing too much, sit down and
really think about which tasks other family members may be able to do.
-
If religious, ask family members to keep you in their prayers.
-
Monitor how much you are talking about your illness. Oftentimes, when
we change our behavior we go to the other extreme. Thus, you never talked
about your illness, and now you can't stop yourself from talking about
it. Obviously, this is not desirable either. Pay attention to how much
you are talking about your illness to family members -- you don't want
to overwhelm them. Give the information in small doses because, remember,
your family is not used to you talking about this and they are going to
be surprised by this change.
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"I try to
keep my family informed of how I am doing on a daily basis"
Some people freely tell their family members
when they are experiencing symptoms. The assumption is, "The family is
going to worry anyways, so I will keep them informed of what is going on
with me." Oftentimes, people who use this approach find that the topic
of conversation with every family member is the person's health. It seems
that family members aren't interested in anything else. People who use
this approach will also report that most family members seem "disinterested"
and that conversations with family members do not last very long.
Problems with this approach:
-
Family members are interested in how a person with a chronic illness
is doing, yet always hearing that the person is doing poorly is upsetting.
-
If this pattern continues, most family members just assume that they
are supposed to talk about the person's illness -- they haven't talked
about anything else with the person in a long time.
-
The person with the chronic illness can feel like the family doesn't
care because the family just seems interested in how the person is feeling
physically.
Suggestions:
-
Monitor how much you are talking about your illness. Make sure you also
talk about other things. Possible topics include:
-
An interest in how other family members are doing.
-
Information you have read or seen on TV that you found interesting that
is NOT related to your illness.
-
Movies, books, plays, concerts, etc. that you have heard about and find
interesting.
-
Asking family members what they have found interesting lately.
-
Asking about family members' careers, family, hobbies, etc.
-
Get involved in activities that do not focus on your illness. People
who typically use this approach often "become their illness." What this
means is that their life seems to be centered around their illness. Try
to remind yourself of things you enjoyed doing prior to your illness that
you could still do now. Before you quickly say, "I can't do anything now,"
really think about hobbies and interests you have. Chances are you are
going to find several things that you used to enjoy that you could still
do now.
-
Beware of going to the other extreme. You frequently talk about your
illness. Try to avoid going to the other extreme and never talk
about your illness. The key is finding a happy medium.
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"I will
often lie and say that I am doing fine when I am not"
Just about anyone with a chronic illness has done
this. For example, you have a condition which requires that you use some
sort of assistive device (e.g., cane, walker, cast, brace, crutches) and
you are out shopping. It is not unusual for strangers to come up and ask
about your condition. You haven't seen someone in a long time and they
ask how you are doing. In certain situations, this approach does have its
uses. For example, most of us do not want to spend time going through the
"gory details" of our condition to strangers when we are out shopping or
running other errands.
However, using this approach in most situations
goes hand-in-hand with the "I
don't talk about my illness" approach. Thus, please read the problems
and suggestions given in that section.
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"I don't
need to tell my family how I'm doing because they always can tell"
When people say this to me, the first question
that pops into my head is, "How do they know?" Take a step back and think
about how your family members know you are having a "bad day" without you
even saying anything. Here are some common responses:
"I just go to bed and want to be left alone"
"I get really angry and irritable"
"I start crying"
"Every little thing sets me off"
"I moan and complain"
Problems with this approach:
-
By not talking to family members, you are forcing them to pay very close
attention to how you are acting and people do not like to monitor someone
else's behavior this intensely.
-
If you do not tell people what is going on, they often feel like they
have to "guess" what is wrong and they could be wrong. Some common questions
family members will ask themselves:
-
"Did I do something to upset you?"
-
"Did something happen during the day that upset you?"
-
"Are you having a 'bad symptom day' or getting worse?"
Suggestions:
-
Most people with chronic illnesses have bad symptom days. You need to
discover a way to communicate this to family members in words, rather than
actions. Some possible comments:
-
"I'm having a bad symptom day today"
-
"I'm not feeling so hot today"
-
"I'm going to lie down for a while because I'm not feeling well"
-
Provide family members with suggestions about how they can help you
through this bad symptom day.
-
For many chronic illnesses, symptoms vary from day to day. It is good
to take a positive approach and tell your family members that you believe
that this is only temporary and that you should feel better soon.
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*
This web page is designed to provide information and does not constitute
development of a professional relationship. You are strongly encouraged
to speak to the health care professional(s) who are treating your chronic
illness to obtain a suitable referral.
Do you have your own suggestions for this section? Feel free to
email
me.
