The World Outside
- Some friends will deal well with your illness and provide gratifying
support.
- Some will be unable to cope with the possibility of death and will disappear
from your life.
- Most will want to help but may be uncomfortable and unsure of how to
go about it. Help your friends support you:
- Ask yourself, "Have friends deserted me or have I withdrawn from
them?"
- Telephone those who don't call you.
- Ask for simple assistance-to run an errand, prepare a meal, or visit.
These small acts bring friends back into contact and help them feel useful
and needed.
- If you are alone, ask your physician, social worker or pastor to "match"
you with another patient. Someone else needs friendships, too.
- Groups of other cancer patients can offer new friendships, understanding,
support, and companionship.
- When you return to work, coworkers, like others, may shun you, support
you or wait for your cues on how to respond.
- There are laws to protect you against job discrimination.
Anyone who has been affected intimately by cancer knows that it can
change the pattern of our relationships outside the family as well as those
within. Friends react as they do to other difficult situations. Some handle
it well; others are unable to maintain any association at all. Casual acquaintances,
and even strangers, can cause unintended pain by asking thoughtless questions
about visible scars, artificial devices, or other noticeable changes in
appearance.
One or two people within your circle may be gratifying in their devotion
and in the sensitivity they show toward your needs. One woman said her mother-in
law found one or two close friends with whom she felt truly relaxed. They
were not startled when she laughed nor ill at ease when she cried. With
others she maintained an outward calm.
"I have three really good friends with whom I can talk about my cancer,"
explained another. "I have talked about dying with my sister, and she
does understand a lot more than I thought a person without cancer could."
When Friends Don't Call
- Lost friendships are one of the real heartbreaks people with cancer
face. Friends do not call for a variety of reasons. They might not know
how to respond to a change in your appearance. They might be avoiding you
in order to avoid facing the possibility of your death and the eventuality
of their own. Their absence does not necessarily mean they no longer care
about you. Still, it is little comfort to know that "out there"
you have friends if they have so little confidence in their worth as companions
that they would rather say nothing than risk saying the wrong thing.
- "I see that my friends don't know how to talk to me, and they shy
away from me," wrote one person with cancer. "Most people are
very ignorant on the subject of cancer."
- If you believe discomfort rather than fear is keeping a particular friend
from visiting, you might try a phone call to dissolve the barrier. Yet you
cannot combat all the reasons why people avoid you; some still believe that
cancer is contagious. Certainly, you cannot call them up and say, "Hey,
get out of the Dark Ages. It's not catching!"
- Knowing that others are ignorant does little to lessen the hurt and
frustration of being needlessly isolated. You only can change the attitudes
of others if you are among them. Examine carefully whether friends shun
you or whether you have withdrawn from your usual social contacts to protect
your own feelings. You can neither enlighten nor draw comfort from an empty
room. If possible, the best place to be is out in the world with other people.
Easing the Way for Others
- Most people fall into a middle group, somewhere between the staunch
friends and the "avoiders." They are groping for an approach to
cancer with which they can be comfortable. These people may say things which
sound inane, insincere, or hurtful. You have to keep reminding yourself
that they are trying their best. If you are open about cancer, they may
relax, too.
- A perceptive high school student explained, "I guess what I'm trying
to say boils down to this. One of these days people may not feel so uneasy
around a disabled person. I'm not bitter with people; I'm really quite at
ease with them and strive to make them feel at ease with me. They feel afraid
of me, and consequently trip over their tongues. I have learned a lot by
living in a disabled person's world and am quite willing to share it. One
of these days, I may be given the chance."
- A woman who had had extensive surgery for oral cancer explained how
she tried to lessen the discomfort of others without causing discomfort
for herself. She focused on her disability rather than its cause.
- "I am determined to put people at ease, so when I speak on the
telephone, or to someone for the first time, I immediately say, 'I have
a speech defect, so please don't hesitate to tell me if you don't understand
me.' I also carry a pencil and paper and offer to write what can't be understood.
I find it much more frustrating to have people try to save my feelings by
pretending to understand me when they don't."
- A man we know startled his fishing buddies, who were paying a group
visit to his hospital room. He positively threw open the door to honest
communication when he boomed out, "You know, I've learned one hell
of a lot about cancer since I became a member of the club."
- We can't all be that direct. He had been a straight forward man all
his life. But he had let his friends know that he preferred talking about
his cancer to pussyfooting around it.
Helping Friends Help
- Many times friends are waiting for some clue as to what behavior is
appropriate. They might not be sure you want company. They might call to
"see how things are going," then add as they hang up the phone,
"Let me know if there's anything I can do to help."
- These friends are asking for more than a job to do. They are asking
for direction, giving you clues that they will not desert you if only they
have some guidance on how to proceed. The next time friends or relatives
offer assistance, try to look at the offer in that light. If you can think
of one specific errand they can run, one chore they can take off your hands,
you have done them and yourself a favor.
- "Mother hasn't been out since Dad became ill. I think a Saturday
afternoon at the shopping center would do wonders for her."
- "We'll be at the hospital all day Thursday for chemotherapy. It
would be such a help to me if you could whip up a casserole for our dinner."
- "I don't feel much like talking these days, but if you'd bring
your needlepoint and come sit with me, it would be pleasant to have your
company."
- Most people are grateful if there is something concrete they can do
to show their continuing friendship. If such tasks bring them into your
home, it gives them a chance to see that you are still living and functioning-
not a funeral waiting to happen. Their next visit might be easier, and then
they may be able to stop by without a "reason."
- Choosing to help friends in this way is no easy undertaking. When you
feel stretched to breaking just keeping your own life going, it is difficult
to extend your energies further to make others feel at ease. It can be a
new and difficult experience for some, this reaching out, but the rewards
can be exhilarating. We all feel better giving than receiving, so it might
be easier if you think of your requests for assistance as letting others
feel useful, rather than as petitions for help.
Fighting Loneliness
- Regardless of what you do, your friends might desert you. Circumstances
might have left you alone before cancer struck. This is a special, awful
loneliness for any human being to endure. There are no easy answers, no
pat solutions. The mutual support of other people with cancer might provide
some solace and comfort. There probably are others in your community who
need your companionship as much as you need theirs. Being housebound need
not deprive you of visits from others who would like to share some quiet
moments or some deeply felt sorrow with someone who will understand. A physician,
social worker, visiting nurse, or member of the clergy should be able to
help you contact another cancer patient or shut-in who could use company.
On the Job
- For many of us, work forms a cornerstone of life. In addition to income,
it provides satisfaction and a chance to interact with peers. Returning
to work as soon as you are physically able is one way to return stability
to your life. If treatment has made it impossible to return to a former
line of work, investigate the availability of rehabilitation and retraining
programs within the community to prepare you for another occupation.
- You might find on returning to your job that relationships with coworkers
have changed. One person with cancer found his associates had requested
separate restroom facilities for him-that old "cancer is catching"
myth again!
- "If we pretend Jane never had cancer, it will go away" is
the approach of many coworkers toward cancer patients when they return to
work. This can be demoralizing. Some have found that if you look well and
are able to function, people tend to underestimate the seriousness of your
condition. They might mumble something like, "Glad you're back; you
look great," and never ask how you really feel. In turn, you might
find you resent their good health and nonchalance as you wonder what happened
to the companionship you had looked forward to in returning to work.
- The best you can do is assume that your coworkers, like so many others,
are unsure of what to say or are trying to protect your feelings-or their
own.
- Others returning to work might be perfectly delighted with a rather
cavalier attitude toward their condition. "Glad you're back,"
might be all you want to hear before plunging into your old routine. If
you are being coddled at home, returning to a situation where others do
not think of you as sick might be the greatest therapy yet devised.
- Some people believe it eases relationships with coworkers if they are
quite open about their condition. One young woman described in a speech
to other cancer patients why she decided to tell about the cancer.
- "Since my bones don't cooperate, it's hard for me to appear graceful,
but I have a choice in this situation," she said. "I can either
move as though nothing is bothering me (while gritting my teeth and giving
my contact lenses a salty bath), or I can move awkwardly in reasonable comfort.
I think this is one of the reasons I don't mind people knowing I have multiple
myeloma. I keep having this flash of having died and having someone who
just found out about the myeloma saying, 'So that's why she kept falling
over."'
- If cancer treatment meant leaving your old job, discrimination may be
a hurdle to returning to work. Even the person who is completely recovered
may find it difficult to obtain employment. The rationale, one hears from
indirect sources, is that people who have had cancer take too many sick
days, are a poor insurance risk or will make coworkers uncomfortable.
- How can you cope? You might begin with this information: Under Federal
law (the Federal Rehabilitation Act of 1973 and the Americans
with Disabilities Act of 1990), most employers cannot discriminate against
handicapped workers, including people with cancer. These laws apply to Federal
employers, employers that receive Federal funds, and private companies with
25 or more employees (15 or more employees after mid-1994). The laws protect
cancer patients in hiring practices, promotions, transfers, and layoffs.
Every state also forbids discrimination based on handicap; however, only
some of these state laws protect all people with cancer.
- If you apply for a job with a government agency or a firm with government
contracts and believe you did not get the job because of your cancer. you
can file a complaint under Section 504 of the Federal Rehabilitation
Act of 1973. You should write directly to the Federal agency involved.
If you do not know the name of the agency that provides Federal funds to
the employer, contact the Civil Rights Division of the U.S. Department of
Justice, Washington, D.C., (202) 724-2235.
- If you believe you were discriminated against by a private employer
because of your cancer, you should file your complaint with the closest
regional office of the Equal Employment Opportunities Commission. To obtain
the location of your regional EEOC office and find out exactly what to do,
call the EEOC Public Information System at (800 USA-EEOC).
To find out more about your legal rights, check with:
- Your local American Cancer Society. Offices have state-specific information
about cancer and employment discrimination.
- Your social worker. He or she may know about laws in your state and
can also tell you which state agency is in charge of protecting employment
rights.
- Your state's Department of Labor or Office of Civil Rights.
- The National Coalition for Cancer Survivorship. This organization offers
information and limited attorney referrals.
- Regional or national offices of the American Civil Liberties Union.
- Your representative or senator. Congressional and senate offices have
information about Federal and state laws. If you're not sure who represents
your district, call your local library or local chapter of the League of
Women Voters.