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oneday
Regular Member


Date Joined Nov 2006
Total Posts : 175
   Posted 7/22/2007 12:36 PM (GMT -6)   
hi everyone

i nomral post on the ibs baord. i hvae had so mnay tests for my health prolbems. i am suffering from depresaion and anixoty. i just feel so bad at mo. fed up wiht giong thuogh waht i hvae. all the tests and thne to be told there is nothnig thye can do for me. i am in constant pian from my stomach. i hvae tired loads of pian meds anitdepressants etc nothnig has made me feel any bter.

i am hvaeing counciling and am under my local mental health unit. but i am still feeling the same as i did wehn i started giong up there. i hvae a cronic heaelth condition whcih there is no cure. it is there all the time reminding why i am not liveing a nomral live. i guess i am jsut so angry at hvaeing somethnig thta is controling me no mater waht i do.

i am jsut giong in big cirles whcih nothnig changes and i feel like thsi all the time. i was siting at home the other day wehn i thnik i had a paic attack. i hvae had thme in the past but seemed to be able to ingonre thme. i would be able to calm my self down enguoh so it went away.

sorry to moan. i just had to write this. as feeling so crap at mo.

ps sorry for speling i am dsylexic.

Drconnoisseur
Regular Member


Date Joined Jul 2007
Total Posts : 102
   Posted 7/22/2007 2:55 PM (GMT -6)   
Believe it or not, I know how you feel.  I've been dealing with chronic illnesses all my life, and it makes me very depressed sometimes.  Lately my depression has been getting worse because in April I fell and broke my ankle in two places and had surgery, and I just started walking again a week ago.  Three months in a wheelchair.  Plus my Crohn's is out of control, which means my diabetes is out of control, which means I got an infection that settled into my lungs and made my asthma out of control, so I just generally feel like a bucket of refried dog crap.  Anyway, I didn't mean for this post to become about my problems; just to say that I too am very depressed because of chronic health issues.  It's hard, because not many people understand, but that's what this forum is for.  There are others who do understand, and we all wish you well.
 
It sounds like you're down on anti-depressants, but don't give up.  It took me years to find the right combination, but when I found it, I felt oodles better.  It was like night and day.  And maybe you could try an anti-anxiety pill for your anxiety; those are different from anti-depressants, of course, and they might help you a great deal.  My favorite is ativan; it always takes the edge right off.
 
I don't really know what to say, because I can't take your troubles away, and being sick all the time really does stink, no doubt about it.  So all I'll say is hang in there and I'll be rooting for you.
 
29 yo female with two fuzzy children: a Pom named Snuggles and a Pom mix named PomPom.
Health History: Type I diabetes (19 years), allergies/asthma, hypothyroidism, osteopenia & multiple fractures, iron-deficiency anemia, Crohn's (of course), and depression (go figure.)
Crohn's History:  May have had it since I was 11 (1988-89), definitely have had it since I was 15, was diagnosed when I was 25 (2003), was un-diagnosed in 2005 and re-diagnosed June 2007.   


stkitt
Forum Moderator


Date Joined Apr 2007
Total Posts : 32602
   Posted 7/22/2007 3:15 PM (GMT -6)   

Dear Oneday

This is Kitt and I am glad you felt comfortable to come here and share how you are feeling.

Some chronic illnesses take people through
periods of good health mixed with periods of
sickness. Adjusting and readjusting to these

Some chronic illnesses take people through periods of good health mixed with periods of sickness. Adjusting and readjusting to these changes may seem daunting.

Depression and anxiety are all rolled up with your anger and fears of this cronic illness that you are dealing with. I understand the anger...why you? I don't have an answer for that.  But please don't let that stop you from fighting for the best possible quality of life you can attain.

I would like to suggest that you talk with your physician about your antidepressant meds and anti-anxiety meds also. I don't know what kind of pain med your on, but be very careful if your on a narcotic as they may interfere with your AD drugs. I know this from personal experience. :)

I can tell you are a wonderful person and you never have to apologize for posting on this forum.  We are here for each other.

Gentle hugs.

Some chronic illnesses take people through
periods of good health mixed with periods of
sickness. Adjusting and readjusting to these
changes may seem daunting.
“In five and a half years of illness, I’ve strug-
gled with the question of how to live a ‘nor-
mal’ life and plan for a future while the possi-
bility of sickness and death looms over me.
I’ve decided it’s that sort of constant uncer-
tainty that is the worst of it all.”
“It’s not easy dealing with the unknown.”
2
Patient Information Publications
Coping with Chronic Illness
3
Patient Information Publications
Coping with Chronic Illness
“For years I knew something was wrong...it
came as a relief to give it a name. It wasn’t in
my head! The fact that I fell a lot and couldn’t
get up was not in my head! Any diagnosis is a
relief because you know what you’ve got to
fight. If people have proper diagnoses, they
know which tiger to fight (as opposed to the
whole jungle). Knowledge is power.”
Handling reactions from others
One of the most crippling things about chronic
illness is the way some cultures shun the sick.
In other cases, people’s own fears keep them
from offering support. By standing up for your-
self, regardless of these feelings, you can work
with others towards better understanding.
“Some people don’t want to help. Maybe they
feel that my illness will rub off on them. They
don’t want to recognize that disease happens,
and it can happen to them and their friends.”
“Whenever I see someone else with an illness, I
say to myself, ‘Poor thing.’ Then I realize that
other people are probably saying the same
about me.”
Part2:How to cope
The way you cope with your illness may have a
lot to do with how you dealt with crises in the
past. As you handled them, you gained strength,
and you may have benefited from the support of
others.
When dealing with chronic illness, you may
find strengths you never thought you had. And
while chronic illness may close the doors to
some parts of your life, it may open others.
Patients coped with chronic illness in many
ways. Acceptance of the condition is essential,
as well as finding ways to feel more in control.
Building on old relationships and starting new
ones are also important.
Acceptance
“For a long time it seemed to me that if I could
just endure a little longer and be patient, I could
resume my life. But it was one disease after
another. It seemed as if I was taking one step
forward and then two steps back- always an
obstacle in my path to good health. Then, at
last, it dawned on me that these obstacles were
my life.”
Having a chronic illness is a very emotional
thing. You grieve, you feel sorrow. But you can-
not stay there. You recognize that, yes, you’re
justified for feeling that way, but to stay there
would rob you of the years you’ve got. You can
be useful, you can get things done, although not
the same things that you did before. You still
can do things and you still can enjoy plenty.”
Taking Control
Chronic illness often requires you to release
control of certain parts of your life. It is normal
to feel angry because you no longer have as
much self-mastery. But it is possible to find
new ways to regain a feeling of control.
4
Patient Information Publications
Coping with Chronic Illness
Control through knowledge
“I know about lab results and what my blood
counts are supposed to be. I know when I’m
supposed to get what medication. I know as
much as I can, and if I don’t know, I ask. What
others don’t know, we learn together.”
“I don’t like being sick, but I deal with what
I’m able to deal with. I can’t change the fact
that I have it, but I can see to it that I know as
much as possible about my condition so I can
take care of myself. I try to be very careful
about taking my medicine accurately, eating the
right kinds of food, exercising as much as I can,
and getting plenty of sleep at night. The rest I
leave in God’s hands and don’t worry about.”
“You never get over grief or pain.You recognize
it but you move past it. Sometimes you get back
into it. Then, you recognize it and you move
past it again. If you dwell in it, you sink lower
and lower, and all there is, is the pain. What
helped me get past my grief and start coming
up for air was the fact that I am curious about a
lot of things. I wanted to know more about the
disease.”
“I learned as much as I could. I got informed so
I could make better decisions.”
“I sought out information so that I could be
proactive about my illness. I’m curious. I like to
know what’s being done to me and I like to
know the results of the procedures.”
Control through planning
“I try to plan: I plan for my needs, I planned my
estate, and I planned my will.”
Control through positive thinking
“I decided to find things I can do-things I am
good at doing.”
“Always fight. Sometimes I take a deep breath,
sometimes I take a time out, but I know that
I’m going to continue just as long as I can. I
just don’t give up. I think that people who are
tenacious manage to rise above the disability
better than others do. People need to look at
what they can do, and be happy, because it
could be a lot worse. A lot of them can still do
something.”
“I use the theory ‘nothing lasts forever.’ This
will be over soon. I’ll get through it and won’t
have to come back to this moment again.”
“If I were to let go, I would feel like I failed in
some way. I know a time will come to let go,
but now is not that time. I’ve got to keep fight-
ing.”
Control through problem solving
“I’ve learned to turn negatives into positives.
For example, when I was told that I had lost my
hearing due to side effects from the medication
that was keeping me alive, I got hearing aids, a
telephone for the hearing impaired, and closed-
captioned TV.”
Benefiting from contact with others
Cooperation with the health care team
“Work with the medical team. If they recom-
mend tests or procedures, be cooperative. Help
them to find the answers for you and for them.
They don’t draw blood just because they want
5
Patient Information Publications
Coping with Chronic Illness
to. They do it so they can help find the answers
to your disease.”
“I hate the feeling of not being in control. When
you’re a patient there’s only so much control
you can have. I want all the control. Learning to
relinquish some of that control is really hard.
But the medical system is what’s keeping me
going.”
Deepening personal relationships
“This illness has brought us closer together. My
friend has shown me the power of his love by
the way he has cared for me. I appreciate him
immensely.”
“You cannot receive more than you give. It’s a
rule of the universe. You can call it religion or
whatever you want to call it. You can call it
God; you can call it nature. You cannot receive
more than you give.”
“I was going through so much that year that I
had people tell me that if they were in my
place, they would have committed suicide. But
what would that have fixed? It would have only
made the situation worse. Then I would have
had four children left in the hands of a man who
had just walked out because he couldn’t handle
the situation. My children gave me strength.”
Support networks
People are often relieved to learn about others
who have experienced what they have gone
through. Support groups help, as do informal
networks.
“I didn’t know what I had. I just got a lot of
colds and just seemed to get sick real often. I
used to wonder, ’Is there anyone else in the
world who has these problems? Am I the only
one?’ Finally, after seeing many doctors, I came
to the NIH and they had a name for what I was
experiencing. I thought, ‘If there is a name for
this and people study it, there must be other
people who have it, too.’ ”
“I’ve never gone to a formal support group, but
I believe everybody needs support. I find mine
through sharing my concerns and greatest fears
with my friends.”
“I think of NIH as my second home. When I
come here I see friends and caregivers whom I
consider a part of my extended family.”
“I found a support group back home. It meets
two times a month at a local hospital. I find that
being able to sit down with other people who
deal with the exact things I do, really helps. I
can’t keep it all inside. I know that saying, ‘You
take it out on your gut.’ Well, I already have gut
problems, so if I keep my feelings inside, it will
only make things worse. In a support group I
don’t feel self-conscious when I talk about my
illness, because these people understand.”
“I have a few friends who don’t know what’s
going on with me. Not everyone needs to know
all the details of my life. Then I have friends
with whom I share deep connections. They
know that I’m not well and if I say I can’t do
something, then I can’t do it and it’s OK.”
Being able to ask for help
Independence is highly valued in our culture.
Those with chronic illnesses may face the chal-
6
Patient Information Publications
Coping with Chronic Illness
lenge of learning how to ask for help, and being
able to accept it.
“I used to hate it when others were always try-
ing to help me. They all knew something was
wrong, and they felt that they needed to help.
I’ve learned to accept some help without having
my pride get in the way. I say, ‘No, thank you’
to things I can do for myself, and I’ve learned
to ask for help when I need it.”
“I’m learning how to be humble. I’ve really had
to ask for help over and over again. This is the
most difficult thing for me about having a
chronic illness. Most people don’t want to ask
for help. I don’t. I’ve been independent all my
life. Now when I have to ask for help, it’s not
easy. I hate it. So I started out trying to do it all
myself. Then I realized, ‘Now wait a minute,
this isn’t fair to other people. People get a lot
out of giving.’ So I needed to find a way to let
other people give.”
“I was afraid that I might not be able to live
independently. Of course I would never admit
this to anyone. But one day I decided I would
try, and with the support of friends and family, I
did it!”
Part3: Relating to yourself
Self-assertion
“When I was in a wheelchair, I would go into a
store with my daughter. I would put the product
on the counter. I would put the money on the
counter. I would hand it to the sales clerk. The
sales clerk would give the change to my daugh-
ter and give her the bag. This happened over
and over; it made me furious. At first I let it go.
Then I learned to speak up very firmly. ‘That’s
my money, give it to me, please.’ Now I consid-
er it my responsibility to teach people to look at
me, to interact with me.”
Accepting your physical changes
“It looked like I exchanged bodies with some-
one else along the way. The first time I saw
myself in the mirror when I had lost so much
weight and was having so many problems, I
looked frail. My daughters were helping me to
use the bathroom, and I didn’t even look like
myself. A lot of things were so different. That
experience has helped me look at myself in a
new way. It has also helped me to be more
attuned to my body so that I can report changes
to my doctor.”
“In the beginning I used to hide my scars. I
used to get upset and angry when I saw some-
one beautiful walk by. But now I’ve learned to
accept myself for who I am. I’ve learned to see
my positive qualities. I can look at myself in the
mirror and see someone who is beautiful.”
“I have become more at peace with myself as
the years have gone by.”
“I’ve learned that you can’t be vain with this ill-
ness.”
“I’ve never had a long-term relationship. Most
of my friends are married and have children. I
get sad about that. It’s hard, but I know there is
someone out there who will accept me as I am.
I didn’t even accept myself until a few years
ago. I had to learn that it’s okay to have this ill-
7
Patient Information Publications
Coping with Chronic Illness
ness. There’s so much more to me than this dis-
ease.”
Getting in tune with yourself
“I close the door and I meditate. It comes from
inside, from my heart. From that which we have
already been given. I take deep breaths and
relax and allow this innerness to come out.“
“I’m doing all the things that are soul fulfilling.
I do things that give me the most pleasure. I
feel like I’ve gone back to basics. I’m in tune
with myself.”
Expressing feelings
You may feel angry at your illness, your body,
yourself, at health care providers, or family and
friends. This is common and normal. It is a
challenge to express these feelings in ways that
don’t hurt those around you.
“I’ve struggled with anger in my life because I
never want to hurt another person. I’m not a
screamer, instead I play the piano.”
“Sometimes I protect myself mentally with an
image of a shield on the outside. If I am really
feeling overwhelmed, I do that many times,
until I’m strong enough to open up again.”
“I think you have to allow yourself to have a
pity party and then cut it out. You have to cry.
You can’t be tough all the time. You can’t deny
the feelings. They’re real but you don’t want to
spend all your time crying. It just makes your
eyes puffy after awhile, anyway.”
Just as expressing anger and pain helps, so does
expressing positive emotions and doing pleasur-
able activities. Humor, faith, hope, and creativi-
ty all have great value in healing.
Humor
“If I live to be one of the old ladies at the quilt-
ing bee where they talk about their surgeries,
boy will I be able to participate!”
Faith
“Just knowing I’m not alone helps. It’s just a
feeling. Believe me, that feeling isn’t there all
the time. I cried last night because I didn’t want
to be here. There are the IV poles and the nurs-
es, and I didn’t want to be here, but my faith
helped me through.”
“Adversity is not the time to look at the nega-
tive. It’s a learning experience. Hold onto your
faith, whatever it is. If you are rooted in faith
you’ll be OK. It’s not the end of the world.
There are many possibilities. It may seem
impossible, but every day is a new day of possi-
bilities.”
“I tried to bargain with God. No matter how
much I bargained, God wouldn’t listen, or at
least that’s what I thought. But I see that my ill-
ness has given me new goals in life. Goals and
dreams that I never would have imagined
before. Maybe this is God’s answer to me.”
Hope
“Hope is born out of despair. You have to take
risks. When you take risks, courage grows.
That’s what I’ve had to do. I’ve relied on my
faith. It speaks to my spirit, and it helps me to
cope better.”
8
Patient Information Publications
Coping with Chronic Illness
“I think we have to have a belief in something.
It’s like a cushion to fall back on. You have to
believe in something. You must have hope or I
don’t think you can survive. People have to find
out what they believe in to have hope.”
“This disease is not a death sentence. Doctors
are doing research, and so there could be a cure.
NIH is a place of hope for me.”
Helping yourself through activity
Creativity
“Since I’m away in the hospital a lot I don’t get
to spend as much time with my sons as I’d like,
so I write them letters. I tell them how I feel
and that I love them. I give them advice and
hope that if they ever have to face something
like this, they can learn from me.”
“When I am strong enough and have enough
energy to do something, I make crafts. I need
something to do with my hands, so I work on
craft projects for as long as I can. This is my
way of fighting the disease. No one can take
this away from me.”
Pleasurable experiences
“I enjoy swimming when I’m in a large pool all
by myself. I feel as though I’m in my own
world. I can have full control of my body.”
“I like going into nature and taking pictures.
Whether it’s of me in nature, or nature on its
own. I feel that it is one way I can express
myself.”
Distraction
“I pray a lot, and when the pain gets really bad,
I pray for a distraction. One time I was lonely
and in isolation at NIH. It was snowing and bit-
ter cold outside and I was in a lot of pain. I just
wanted the pain to go away. I knew the medica-
tion would take about 20 minutes to work, but I
had to wait.
“I turned my head to the window and a pigeon
landed; then another. I watched them and just
thought how beautiful they were. But they were
out in the cold. I was safe and warm. They were
looking for food and my tray was coming soon.
Nature distracted me and the pain went away.”
“There are times when I know I’m wounded
and I need a day just to read something frivo-
lous. Murder mysteries, for example. And I do
it. Just relax. Cook if I feel like it; don’t if I
don’t.”
Persronal growth through adversity
Many patients find life meaningful despite
chronic illness. They realize that the road
towards personal growth is difficult, yet the
journey is rewarding. The changes they face
bring unexpected opportunities. Positive think-
ing plays a big part in being able to benefit
from their experiences.
“Once in my life I had a beautiful painting of
water. It showed where the edge of the water
was coming up to the beach. As I saw out
through the water into the very center of the
picture, there was a calm area where the sun
shone down on it. It was beautiful.
9
Patient Information Publications
Coping with Chronic Illness
Before reaching the calm area, it was rough.
From the point where I visually entered the
water, the waves got rougher as I moved toward
the center. That’s my analogy for life.
“Now I’m at a peaceful place, but there have
been times when I felt as though I was barely
treading water. It’s frustrating when I’m back in
the turbulence. Sometimes it seems like my
body is working against me. But I’ve been
through it before, so I know I can do it again if
I have to.”
“I’m a success story. I couldn’t walk at all and
now I can. I can’t run, but I can walk. I accept
who and what I am today.”
“As I work to provide others with knowledge
about this disease, I’m getting better.”
“In order for me to cope well, I have to be a
person willing to grow and work out a balance
for my body, soul, and mind.”
“I believe that each day is not to be taken for
granted. You have to make sure you tell people
you love them because you don’t know where
you’ll be tomorrow.”
“My life is not so bad. I wouldn’t wish it on
anyone, but it’s not that bad. This illness is just
one facet of my life. I’ve learned to love people,
and people love me. Illness is not the main fac-
tor. I can’t have tunnel vision. I’ve been there
before, but I can’t stay there for long.”
“I’ve been writing a journal and I would like
someday to leave it for other patients who are
experiencing what I’m going through. I’d like
to help others.”
“I can never work again. I was in the Navy, and
having to give up that uniform was one of the
saddest things I’ve had to go through. I cried a
lot. I miss it. I loved serving my country. It was
a very emotional experience for me to give up
my work. On the other hand, now I can spend
more time with my family.”
“My granddaughter prayed, ’God don’t let my
grandmother die. Just please make her like she
used to be so we can run and play.’ I can’t run
and play anymore. That was heartbreaking to
realize. My body has changed. We do other
things now. Because of this illness, I actually
think I am a better grandmother than I used to
be.”
“When you have a disability, you dwell on what
you can do, and not on what you can’t. That’s
my gospel.”
“You have to have a good outlook, a good sense
of humor, some curiosity. That combination can
create good coping skills.”
“I just do the best I can today and I’ll deal with
tomorrow, tomorrow. I just take what I’m given
and deal with it. I sound like I have it all
together, but I have my days and that’s OK.”
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Patient Information Publications
Coping with Chronic Illness
“I know a woman who is completely bedridden;
she can’t even dial a phone. But she can punch
a button that gives her the operator and she uses
a wonderful speaker phone and she is the jol-
liest, happiest person I have ever talked to in
my life. She calls people and people call her
and she is still going, still giving of herself. All
she has now is her voice, and she’s using it. She
is a powerful person. When I think of her I
think,’You better get out there and keep work-
ing, kid.’ There are so many people with chron-
ic illnesses who are just amazing.“
“I appreciate the fact that I am alive since I’ve
come so close to death. I want to do my best on
a daily basis with other human beings. Life
becomes so totally different. It’s so much more
important how we treat other people. You have
to figure out what the plan is for your life. I try
to look for the beauty in everything. Even when
it rains, I look for the rainbows.”
The Clinical Center Social Work Department
wishes to thank the patients with chronic ill-
nesses who gave their time to be interviewed for
this booklet.
Where applicable, brand names of commercial
products are provided only as illustrative exam-
ples of acceptable products, and do not imply
endorsement by NIH; nor does the fact that a
particular brand name product is not identified
imply that such product is unsatisfactory.
This information is prepared specifically for
patients participating in clinical research at the
Warren Grant Magnuson Clinical Center at the
National Institutes of Health and is not neces-
sarily applicable to individuals who are
patients elsewhere. If you have questions
about the information presented here, talk to
a member of your healthcare team.
1996
National Institutes of Health
Warren Grant Magnuson Clinical Center
Bethesda, MD 20892
Questions about the Clinical Center?
OCCC@cc.nih.gov
Some chronic illnesses take people through
periods of good health mixed with periods of
sickness. Adjusting and readjusting to these
changes may seem daunting.
“In five and a half years of illness, I’ve strug-
gled with the question of how to live a ‘nor-
mal’ life and plan for a future while the possi-
bility of sickness and death looms over me.
I’ve decided it’s that sort of constant uncer-
tainty that is the worst of it all.”
“It’s not easy dealing with the unknown.”
2
Patient Information Publications
Coping with Chronic Illness
3
Patient Information Publications
Coping with Chronic Illness
“For years I knew something was wrong...it
came as a relief to give it a name. It wasn’t in
my head! The fact that I fell a lot and couldn’t
get up was not in my head! Any diagnosis is a
relief because you know what you’ve got to
fight. If people have proper diagnoses, they
know which tiger to fight (as opposed to the
whole jungle). Knowledge is power.”
Handling reactions from others
One of the most crippling things about chronic
illness is the way some cultures shun the sick.
In other cases, people’s own fears keep them
from offering support. By standing up for your-
self, regardless of these feelings, you can work
with others towards better understanding.
“Some people don’t want to help. Maybe they
feel that my illness will rub off on them. They
don’t want to recognize that disease happens,
and it can happen to them and their friends.”
“Whenever I see someone else with an illness, I
say to myself, ‘Poor thing.’ Then I realize that
other people are probably saying the same
about me.”
Part2:How to cope
The way you cope with your illness may have a
lot to do with how you dealt with crises in the
past. As you handled them, you gained strength,
and you may have benefited from the support of
others.
When dealing with chronic illness, you may
find strengths you never thought you had. And
while chronic illness may close the doors to
some parts of your life, it may open others.
Patients coped with chronic illness in many
ways. Acceptance of the condition is essential,
as well as finding ways to feel more in control.
Building on old relationships and starting new
ones are also important.
Acceptance
“For a long time it seemed to me that if I could
just endure a little longer and be patient, I could
resume my life. But it was one disease after
another. It seemed as if I was taking one step
forward and then two steps back- always an
obstacle in my path to good health. Then, at
last, it dawned on me that these obstacles were
my life.”
Having a chronic illness is a very emotional
thing. You grieve, you feel sorrow. But you can-
not stay there. You recognize that, yes, you’re
justified for feeling that way, but to stay there
would rob you of the years you’ve got. You can
be useful, you can get things done, although not
the same things that you did before. You still
can do things and you still can enjoy plenty.”
Taking Control
Chronic illness often requires you to release
control of certain parts of your life. It is normal
to feel angry because you no longer have as
much self-mastery. But it is possible to find
new ways to regain a feeling of control.
4
Patient Information Publications
Coping with Chronic Illness
Control through knowledge
“I know about lab results and what my blood
counts are supposed to be. I know when I’m
supposed to get what medication. I know as
much as I can, and if I don’t know, I ask. What
others don’t know, we learn together.”
“I don’t like being sick, but I deal with what
I’m able to deal with. I can’t change the fact
that I have it, but I can see to it that I know as
much as possible about my condition so I can
take care of myself. I try to be very careful
about taking my medicine accurately, eating the
right kinds of food, exercising as much as I can,
and getting plenty of sleep at night. The rest I
leave in God’s hands and don’t worry about.”
“You never get over grief or pain.You recognize
it but you move past it. Sometimes you get back
into it. Then, you recognize it and you move
past it again. If you dwell in it, you sink lower
and lower, and all there is, is the pain. What
helped me get past my grief and start coming
up for air was the fact that I am curious about a
lot of things. I wanted to know more about the
disease.”
“I learned as much as I could. I got informed so
I could make better decisions.”
“I sought out information so that I could be
proactive about my illness. I’m curious. I like to
know what’s being done to me and I like to
know the results of the procedures.”
Control through planning
“I try to plan: I plan for my needs, I planned my
estate, and I planned my will.”
Control through positive thinking
“I decided to find things I can do-things I am
good at doing.”
“Always fight. Sometimes I take a deep breath,
sometimes I take a time out, but I know that
I’m going to continue just as long as I can. I
just don’t give up. I think that people who are
tenacious manage to rise above the disability
better than others do. People need to look at
what they can do, and be happy, because it
could be a lot worse. A lot of them can still do
something.”
“I use the theory ‘nothing lasts forever.’ This
will be over soon. I’ll get through it and won’t
have to come back to this moment again.”
“If I were to let go, I would feel like I failed in
some way. I know a time will come to let go,
but now is not that time. I’ve got to keep fight-
ing.”
Control through problem solving
“I’ve learned to turn negatives into positives.
For example, when I was told that I had lost my
hearing due to side effects from the medication
that was keeping me alive, I got hearing aids, a
telephone for the hearing impaired, and closed-
captioned TV.”
Benefiting from contact with others
Cooperation with the health care team
“Work with the medical team. If they recom-
mend tests or procedures, be cooperative. Help
them to find the answers for you and for them.
They don’t draw blood just because they want
5
Patient Information Publications
Coping with Chronic Illness
to. They do it so they can help find the answers
to your disease.”
“I hate the feeling of not being in control. When
you’re a patient there’s only so much control
you can have. I want all the control. Learning to
relinquish some of that control is really hard.
But the medical system is what’s keeping me
going.”
Deepening personal relationships
“This illness has brought us closer together. My
friend has shown me the power of his love by
the way he has cared for me. I appreciate him
immensely.”
“You cannot receive more than you give. It’s a
rule of the universe. You can call it religion or
whatever you want to call it. You can call it
God; you can call it nature. You cannot receive
more than you give.”
“I was going through so much that year that I
had people tell me that if they were in my
place, they would have committed suicide. But
what would that have fixed? It would have only
made the situation worse. Then I would have
had four children left in the hands of a man who
had just walked out because he couldn’t handle
the situation. My children gave me strength.”
Support networks
People are often relieved to learn about others
who have experienced what they have gone
through. Support groups help, as do informal
networks.
“I didn’t know what I had. I just got a lot of
colds and just seemed to get sick real often. I
used to wonder, ’Is there anyone else in the
world who has these problems? Am I the only
one?’ Finally, after seeing many doctors, I came
to the NIH and they had a name for what I was
experiencing. I thought, ‘If there is a name for
this and people study it, there must be other
people who have it, too.’ ”
“I’ve never gone to a formal support group, but
I believe everybody needs support. I find mine
through sharing my concerns and greatest fears
with my friends.”
“I think of NIH as my second home. When I
come here I see friends and caregivers whom I
consider a part of my extended family.”
“I found a support group back home. It meets
two times a month at a local hospital. I find that
being able to sit down with other people who
deal with the exact things I do, really helps. I
can’t keep it all inside. I know that saying, ‘You
take it out on your gut.’ Well, I already have gut
problems, so if I keep my feelings inside, it will
only make things worse. In a support group I
don’t feel self-conscious when I talk about my
illness, because these people understand.”
“I have a few friends who don’t know what’s
going on with me. Not everyone needs to know
all the details of my life. Then I have friends
with whom I share deep connections. They
know that I’m not well and if I say I can’t do
something, then I can’t do it and it’s OK.”
Being able to ask for help
Independence is highly valued in our culture.
Those with chronic illnesses may face the chal-
6
Patient Information Publications
Coping with Chronic Illness
lenge of learning how to ask for help, and being
able to accept it.
“I used to hate it when others were always try-
ing to help me. They all knew something was
wrong, and they felt that they needed to help.
I’ve learned to accept some help without having
my pride get in the way. I say, ‘No, thank you’
to things I can do for myself, and I’ve learned
to ask for help when I need it.”
“I’m learning how to be humble. I’ve really had
to ask for help over and over again. This is the
most difficult thing for me about having a
chronic illness. Most people don’t want to ask
for help. I don’t. I’ve been independent all my
life. Now when I have to ask for help, it’s not
easy. I hate it. So I started out trying to do it all
myself. Then I realized, ‘Now wait a minute,
this isn’t fair to other people. People get a lot
out of giving.’ So I needed to find a way to let
other people give.”
“I was afraid that I might not be able to live
independently. Of course I would never admit
this to anyone. But one day I decided I would
try, and with the support of friends and family, I
did it!”
Part3: Relating to yourself
Self-assertion
“When I was in a wheelchair, I would go into a
store with my daughter. I would put the product
on the counter. I would put the money on the
counter. I would hand it to the sales clerk. The
sales clerk would give the change to my daugh-
ter and give her the bag. This happened over
and over; it made me furious. At first I let it go.
Then I learned to speak up very firmly. ‘That’s
my money, give it to me, please.’ Now I consid-
er it my responsibility to teach people to look at
me, to interact with me.”
Accepting your physical changes
“It looked like I exchanged bodies with some-
one else along the way. The first time I saw
myself in the mirror when I had lost so much
weight and was having so many problems, I
looked frail. My daughters were helping me to
use the bathroom, and I didn’t even look like
myself. A lot of things were so different. That
experience has helped me look at myself in a
new way. It has also helped me to be more
attuned to my body so that I can report changes
to my doctor.”
“In the beginning I used to hide my scars. I
used to get upset and angry when I saw some-
one beautiful walk by. But now I’ve learned to
accept myself for who I am. I’ve learned to see
my positive qualities. I can look at myself in the
mirror and see someone who is beautiful.”
“I have become more at peace with myself as
the years have gone by.”
“I’ve learned that you can’t be vain with this ill-
ness.”
“I’ve never had a long-term relationship. Most
of my friends are married and have children. I
get sad about that. It’s hard, but I know there is
someone out there who will accept me as I am.
I didn’t even accept myself until a few years
ago. I had to learn that it’s okay to have this ill-
7
Patient Information Publications
Coping with Chronic Illness
ness. There’s so much more to me than this dis-
ease.”
Getting in tune with yourself
“I close the door and I meditate. It comes from
inside, from my heart. From that which we have
already been given. I take deep breaths and
relax and allow this innerness to come out.“
“I’m doing all the things that are soul fulfilling.
I do things that give me the most pleasure. I
feel like I’ve gone back to basics. I’m in tune
with myself.”
Expressing feelings
You may feel angry at your illness, your body,
yourself, at health care providers, or family and
friends. This is common and normal. It is a
challenge to express these feelings in ways that
don’t hurt those around you.
“I’ve struggled with anger in my life because I
never want to hurt another person. I’m not a
screamer, instead I play the piano.”
“Sometimes I protect myself mentally with an
image of a shield on the outside. If I am really
feeling overwhelmed, I do that many times,
until I’m strong enough to open up again.”
“I think you have to allow yourself to have a
pity party and then cut it out. You have to cry.
You can’t be tough all the time. You can’t deny
the feelings. They’re real but you don’t want to
spend all your time crying. It just makes your
eyes puffy after awhile, anyway.”
Just as expressing anger and pain helps, so does
expressing positive emotions and doing pleasur-
able activities. Humor, faith, hope, and creativi-
ty all have great value in healing.
Humor
“If I live to be one of the old ladies at the quilt-
ing bee where they talk about their surgeries,
boy will I be able to participate!”
Faith
“Just knowing I’m not alone helps. It’s just a
feeling. Believe me, that feeling isn’t there all
the time. I cried last night because I didn’t want
to be here. There are the IV poles and the nurs-
es, and I didn’t want to be here, but my faith
helped me through.”
“Adversity is not the time to look at the nega-
tive. It’s a learning experience. Hold onto your
faith, whatever it is. If you are rooted in faith
you’ll be OK. It’s not the end of the world.
There are many possibilities. It may seem
impossible, but every day is a new day of possi-
bilities.”
“I tried to bargain with God. No matter how
much I bargained, God wouldn’t listen, or at
least that’s what I thought. But I see that my ill-
ness has given me new goals in life. Goals and
dreams that I never would have imagined
before. Maybe this is God’s answer to me.”
Hope
“Hope is born out of despair. You have to take
risks. When you take risks, courage grows.
That’s what I’ve had to do. I’ve relied on my
faith. It speaks to my spirit, and it helps me to
cope better.”
8
Patient Information Publications
Coping with Chronic Illness
“I think we have to have a belief in something.
It’s like a cushion to fall back on. You have to
believe in something. You must have hope or I
don’t think you can survive. People have to find
out what they believe in to have hope.”
“This disease is not a death sentence. Doctors
are doing research, and so there could be a cure.
NIH is a place of hope for me.”
Helping yourself through activity
Creativity
“Since I’m away in the hospital a lot I don’t get
to spend as much time with my sons as I’d like,
so I write them letters. I tell them how I feel
and that I love them. I give them advice and
hope that if they ever have to face something
like this, they can learn from me.”
“When I am strong enough and have enough
energy to do something, I make crafts. I need
something to do with my hands, so I work on
craft projects for as long as I can. This is my
way of fighting the disease. No one can take
this away from me.”
Pleasurable experiences
“I enjoy swimming when I’m in a large pool all
by myself. I feel as though I’m in my own
world. I can have full control of my body.”
“I like going into nature and taking pictures.
Whether it’s of me in nature, or nature on its
own. I feel that it is one way I can express
myself.”
Distraction
“I pray a lot, and when the pain gets really bad,
I pray for a distraction. One time I was lonely
and in isolation at NIH. It was snowing and bit-
ter cold outside and I was in a lot of pain. I just
wanted the pain to go away. I knew the medica-
tion would take about 20 minutes to work, but I
had to wait.
“I turned my head to the window and a pigeon
landed; then another. I watched them and just
thought how beautiful they were. But they were
out in the cold. I was safe and warm. They were
looking for food and my tray was coming soon.
Nature distracted me and the pain went away.”
“There are times when I know I’m wounded
and I need a day just to read something frivo-
lous. Murder mysteries, for example. And I do
it. Just relax. Cook if I feel like it; don’t if I
don’t.”
Persronal growth through adversity
Many patients find life meaningful despite
chronic illness. They realize that the road
towards personal growth is difficult, yet the
journey is rewarding. The changes they face
bring unexpected opportunities. Positive think-
ing plays a big part in being able to benefit
from their experiences.
“Once in my life I had a beautiful painting of
water. It showed where the edge of the water
was coming up to the beach. As I saw out
through the water into the very center of the
picture, there was a calm area where the sun
shone down on it. It was beautiful.
9
Patient Information Publications
Coping with Chronic Illness
Before reaching the calm area, it was rough.
From the point where I visually entered the
water, the waves got rougher as I moved toward
the center. That’s my analogy for life.
“Now I’m at a peaceful place, but there have
been times when I felt as though I was barely
treading water. It’s frustrating when I’m back in
the turbulence. Sometimes it seems like my
body is working against me. But I’ve been
through it before, so I know I can do it again if
I have to.”
“I’m a success story. I couldn’t walk at all and
now I can. I can’t run, but I can walk. I accept
who and what I am today.”
“As I work to provide others with knowledge
about this disease, I’m getting better.”
“In order for me to cope well, I have to be a
person willing to grow and work out a balance
for my body, soul, and mind.”
“I believe that each day is not to be taken for
granted. You have to make sure you tell people
you love them because you don’t know where
you’ll be tomorrow.”
“My life is not so bad. I wouldn’t wish it on
anyone, but it’s not that bad. This illness is just
one facet of my life. I’ve learned to love people,
and people love me. Illness is not the main fac-
tor. I can’t have tunnel vision. I’ve been there
before, but I can’t stay there for long.”
“I’ve been writing a journal and I would like
someday to leave it for other patients who are
experiencing what I’m going through. I’d like
to help others.”
“I can never work again. I was in the Navy, and
having to give up that uniform was one of the
saddest things I’ve had to go through. I cried a
lot. I miss it. I loved serving my country. It was
a very emotional experience for me to give up
my work. On the other hand, now I can spend
more time with my family.”
“My granddaughter prayed, ’God don’t let my
grandmother die. Just please make her like she
used to be so we can run and play.’ I can’t run
and play anymore. That was heartbreaking to
realize. My body has changed. We do other
things now. Because of this illness, I actually
think I am a better grandmother than I used to
be.”
“When you have a disability, you dwell on what
you can do, and not on what you can’t. That’s
my gospel.”
“You have to have a good outlook, a good sense
of humor, some curiosity. That combination can
create good coping skills.”
“I just do the best I can today and I’ll deal with
tomorrow, tomorrow. I just take what I’m given
and deal with it. I sound like I have it all
together, but I have my days and that’s OK.”
10
Patient Information Publications
Coping with Chronic Illness
“I know a woman who is completely bedridden;
she can’t even dial a phone. But she can punch
a button that gives her the operator and she uses
a wonderful speaker phone and she is the jol-
liest, happiest person I have ever talked to in
my life. She calls people and people call her
and she is still going, still giving of herself. All
she has now is her voice, and she’s using it. She
is a powerful person. When I think of her I
think,’You better get out there and keep work-
ing, kid.’ There are so many people with chron-
ic illnesses who are just amazing.“
“I appreciate the fact that I am alive since I’ve
come so close to death. I want to do my best on
a daily basis with other human beings. Life
becomes so totally different. It’s so much more
important how we treat other people. You have
to figure out what the plan is for your life. I try
to look for the beauty in everything. Even when
it rains, I look for the rainbows.”
The Clinical Center Social Work Department
wishes to thank the patients with chronic ill-
nesses who gave their time to be interviewed for
this booklet.
Where applicable, brand names of commercial
products are provided only as illustrative exam-
ples of acceptable products, and do not imply
endorsement by NIH; nor does the fact that a
particular brand name product is not identified
imply that such product is unsatisfactory.
This information is prepared specifically for
patients participating in clinical research at the
Warren Grant Magnuson Clinical Center at the
National Institutes of Health and is not neces-
sarily applicable to individuals who are
patients elsewhere. If you have questions
about the information presented here, talk to
a member of your healthcare team.
1996
National Institutes of Health
Warren Grant Magnuson Clinical Center
Bethesda, MD 20892
Questions about the Clinical Center?
OCCC@cc.nih.gov
Some chronic illnesses take people through
periods of good health mixed with periods of
sickness. Adjusting and readjusting to these

Respectfully
Kitt
Moderator Anxiety ~ Panic Disorders
*~* Not a mental health professional at all *~*
Dx: Anxiety/Panic, Depression 
******www.healingwell.com/donate******
_____________________________________________________
"If you doubt you can accomplish something, then you can’t accomplish it. You have to have confidence in your ability, and then be tough enough to follow through.” 
~Rosalyn Carter

 


oneday
Regular Member


Date Joined Nov 2006
Total Posts : 175
   Posted 7/24/2007 10:06 AM (GMT -6)   
thnak you for listening to me.

i hvae been back to my gpafter wrinteg thsi and hvae now been told thta i may hvae another diesase whcih i need to get tested for. i am still feeling very down but am trying to dael wiht thnigs. i am shuting myself off from every thnig. my family are finding it hard to help me as i am hvaeing very bad mood swings at mo.

i raelly feel thta yuo know how i am feeling and seems like yuo to hvae gone thuogh very tuough times as well. thnak yuo for yuor surport.
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