Chapter Five: How
our chronic illness affects others
Struggling to live with chronic illness has many different
challenges. We have to come up with ways
to do our usual daily activities, we try
to stay in contact with friends and loved ones and, if you're like me, you have
to add in a lot of time for those doctor appointments, X-rays, blood work,
etc.. It's very easy for me to become
caught up in what's going on in "my" world and lose focus on what's
going on with other people that I know.
Good friends are usually understanding when you don't keep in touch with
them as often as you used to, and some family members may realize that you just
can't live your life the way you once did. However, some friends and loved ones have a difficult time
adjusting to the new "you" and how your illness has changed
things. It's not that you, yourself, has
changed (ok...so we can be cranky and short-tempered when we feel bad or are in
pain, or are having difficulties with the side effects of our medications),
it's that your lifestyle and how you now have to live that has changed.
At first, I didn't totally grasp how my illness was
affecting others. When I had my first
back surgery, everyone rallied around me, offering help. But as time went on, and
new health issues arose and they saw this was the new me, the new "always sick"
me, they went back to their own lives and I was left to deal with my health
problems. I have to admit that at first
I felt hurt and then I struggled with feeling sorry for myself and wondering
where everyone had gone. I began to come
to the realization that some of my friends and family just didn't feel
comfortable being around me or didn't have the patience to deal with someone
who has chronic illness and pain. They
wanted me to get better and when I didn't get better as soon as they thought I
should, they began to withdraw. I could
tell they felt uncomfortable around me. Our
conversations, which used to be good ones, turned into more of a conversation
you'd have with someone you just casually know.
The phone calls and visits were fewer and fewer. They were withdrawing just when I needed
their support.
The major person my illness and chronic pain has affected is
my husband. At first he was optimistic
that "we can beat this thing", but as time went on and it became
evident that this was a life changer, he really struggled. He went through a period of time when he was
angry at the doctors because he felt they weren't trying hard enough or doing
enough. Then he got mad at God because
he couldn't understand why He was allowing this to happen to me. It really affected his relationship with God
for quite some time as he struggled with the "why's" of what all was
happening. Then, he'd get frustrated
with me because I just couldn't do what I used to be able to do, like go to
family functions because I couldn't ride in the car for very long. Relationships with our friends started to
drop off as he got tired of going to events by himself. He told me he got tired of always having to
explain to everyone why I wasn't there and then, in turn, explain what was
going on with me. So, in essence, he
stopped going out very much and stayed more at home all because of my health
issues and the baggage that goes along with it.
We lived like this for the first several
years and I could
feel that things were just not right. He
was depressed over the whole situation, our families struggled with us
not
showing up for family events, and our
friends just seemed to drop off the map, one by one. One day he sat me
down and told me flat out
that he couldn't live like this anymore.
So, we talked it through and decided that even though I was pretty much
home-bound, he needed to resume a social, more "normal" life. At first
he had a hard time going to events
without me but I noticed that when he came home he was more upbeat and
less
depressed. It was then that I realized
that my health issues had become his problem, too, and that they were
taking a
toll on both of us. While my husband is
very, very supportive I couldn't expect him to stop living life just
because my
life has had to change.
So, now he goes to family functions
without me if I'm not up
to going. While it's not what either of
us want, I realize it's what he needs.
He needs to feel like he's living somewhat of a normal life because the
rest of the time is consumed by the needs of living with a spouse who
has
chronic illness/pain. He meets our friends for dinner or goes to events
that they are having, usually alone because I'm not up to going. Some
times I will go, but I have to prepare ahead of time so that it doesn't
set me back. And sometimes it does set me back and I feel worse
afterwards. But the time spent with family and friends has now become
something more cherished and special because I know that the times I get
to see them has to be balanced by taking care of myself.
Please ask yourself how your illness is affecting your loved
ones and friends. While it can be hard
for us to understand and accept the way they respond to us, we have to
understand that they have struggles with us not being who we used to be. Some people simply don't know how to have a
relationship with someone who is chronically ill or in pain. They feel uncomfortable or unsure of how to
interact with us or what to say. And,
let's be honest, we can get so caught up in our health issues that that's all
we focus on...looking for the latest remedy, wondering what the latest medical
findings are for our condition, or keeping track of our next doctor
appointment. We have to realize that we
may have allowed our condition to become the major focus of our life to the
point that we are not being who we used to be.
It definitely is a balancing act, dealing with our illness/pain issues
and trying to live a "normal" life.
Chapter Six: How to keep working when you're ill
Most of us need to work in order to pay our bills and
support our families. Many expenses pull
at our purse strings, and often unexpected expenses arise at the worst time. If
you're dealing with a chronic illness or pain, that can be an additional
unexpected expense, which can range from something as simple as over the
counter pain medication to some serious money if you have to have surgery,
in-home nursing care, etc. Many try to
continue to work as long as they can. Given the strain their finances are
dealing with, it can be very difficult to work while also being chronically
ill or in pain.
When pain, cognitive problems, mobility issues, or fatigue
make it difficult for us to continue our former pace, we can face some rather
difficult and serious choices. The way
we approach these choices will be a reflection of how well we accept our
disease and how it's affecting our lives.
It can be very difficult for some to remain on the job. We try to cover up our disabilities and
difficulties out of fear of losing our job and the income that we get from
it. For some, it's also difficult
because we often place our sense of self-esteem on our job, especially if we're the sort of person
who has a lot of their identity wrapped up in what we do as a profession. For me, I hid my medical problems for a long
time as I didn't want to give up my practice that I had worked so hard to start
up. I forced myself to go to work and at
the beginning I was able to do it. Over
time, however, as I got sicker, it was harder for me to cover it up and my
colleagues began to question me on how I was doing. While I was trying to act like I was doing
okay, they were realizing that I wasn't.
What I began to realize is that pretending to be well was
taking a lot of energy out of me that I simply didn't have. I would leave work and come home so exhausted
that I'd go to bed until it was time to get up and go back to work. I began to rely more and more on caffeine and
fast food to get me through the day because I simply didn't have the energy
when I got home to cook a decent meal for myself. I'm sure that my poor eating habits didn't
help my situation.
Mornings can be especially difficult for those of us who
wake up feeling fatigued, like we haven't even slept, and are in pain or
feeling bad. Often, my thinking was
clouded and I felt very lethargic because I simply was not getting a good
night's sleep due to the tossing and turning all night long. And then there were the periods of insomnia I
would experience. One Christmas I was
actually hanging the outside Christmas lights at 3 a.m. because I couldn't
sleep. It was like I was too exhausted
to sleep!
Taking care of ourselves on the job can be difficult. We want to keep up with our peers and show
that we can still do our job, while all the while we feel horrible. Many days I arrived at the office exhausted
and in tears, wondering how I'd get through the day. I would often hide in the bathroom just to
sit and try to relax and get some rest.
Taking care of ourselves at work can be difficult. Sometimes the very nature of the job won't
allow it. Those that work on an assembly
line can't very well just walk away and go rest for a while. And if your boss is waiting for a report from
you that you've been working on, you can't just say you were too tired to work
on it, so you push yourself. And you
push yourself. Day after day. Until you get to the point where you just
can't do it anymore and your body say's enough...I can't do this anymore.
I was so stubborn and determined not to let my illness and
pain rule my life that it took me several years before I finally gave up work
and went on disability. It was the
hardest thing I had to do as I had so much of my identity wrapped up in what I
did. And, I really enjoyed my job (let's
face it, it's easier to walk away from a job you don't particularly like). I had worked hard to get where I was, and to
have to leave it was one of the hardest things I've ever had to do. I had even began to cut back on the amount of
hours I worked, hoping to retain employment, but towards the end the choice was
made for me...I was just too sick to go to work anymore and I knew it. I didn't like it, but I knew the time had
come for me to accept my health issues and the impact they were having on my
life. So I left the work force and
became a house-bound, chronically ill person.
It has been a real struggle for me as I didn't realize how much of my
identity was wrapped in what I did. It's
not been easy, but I've come to gradually realize that my identity is in who I
am, not in what I do.
For those of you who are still able to work or are trying to
continue working, I'd like to share some some
government regulations that may help you.
I realize that everyone's situation is different so please consider that
as you read this. If you're already like
me and have had to give up on working, then this may be information that you may not
find very interesting. However, if
you're struggling trying to keep your job while being sick or in pain, this may
be beneficial for you to read.
Title I of the Americans with Disabilities Act (ADA), passed
in 1990, means that employers have to make
"reasonable accommodations" to help us do our job and the law
requires that our employers respond to our requests. The ADA applies to employers with fifteen or
more employers. A "reasonable accommodation"
is any modification or adjustment to one's job or work environment that enables
you to perform the essential functions of your position for which you are
qualified to do.
It may involve buying you a more comfortable chair, having
your work area re-located closer to the restroom, buying you a voice-activated computer,
allowing you to take breaks so you can get up and move around, restricting the
amount of weight you have to lift, or even modifying your work schedule to accommodate
your need to work fewer hours or different hours, if you have doctors'
appointments or physical therapy.
Accommodations cannot infringe on other employee's
rights. For example, if you cannot
tolerate perfume you cannot demand your co-worker doesn't wear it, but you can
wear a mask (or simply ask your colleague to not wear it so heavy or at
work). An employer cannot refuse to
honor your request for accommodation unless the company can prove that doing so
would create "undue hardship".
Depending upon the company's size and resources, installing an elevator
for a person who cannot take the stairs might constitute an undue hardship. If the cost of the accommodation is
prohibitive, the ADA requires an employer to allow the individual to provide it
or to help the company pay for it.
Also, an employer may not fire an otherwise qualified
individual who requires reasonable accommodation to perform the "essential
functions" of a job. Anyone can
write an ADA complaint, which is filed with the EEOC. Individuals whose cases cannot be resolved by
the EEOC may file a lawsuit in federal court, but most complaints never get
that far. This is due to the fact that
most accommodations are relatively inexpensive and easy to provide.
The ADA also protects those with disabilities who are
looking for work. According to the law,
employers are forbidden from denying a position to a qualified individual who
needs reasonable accommodation to perform the job. Also, firms are prohibited from seeking
medical information from an applicant prior to making an offer.
Chapter Seven:
Can anything good come out of being ill?
As I sit here, not able to go
out because out of the really hot weather (it makes me feel much worse
than
usual), I struggle to try to find something positive in the midst of it
all. I know others are going out to
Fourth of July picnics and will be watching the fireworks, while I'm
here, stuck in my house. I could go out and join in the festivities,
but I know from past experience that the result would be I'd just end up
feeling bad while there, and it would make me feel even worse for the
rest of
the week, if not longer.
So I have a choice to
make. Do I want to sit here and feel
sorry for myself or do I want to try and find something positive in what I'm
going through. It's a hard decision to
make, especially as I often feel like life passes me by.
It's a difficult question...can anything good come out of me being
ill? Ultimately, it's up to me to decide...
Just as an individual who
has gone through cancer treatment has come to appreciate the quality of life he
or she has left, those of us with a chronic disease can often find meaning in
our own situation. We discover hidden
strengths, find a new sense of direction and often develop healthier habits as
a way to make ourselves better. I've
discovered for myself that ill health has caused me to grow not only
emotionally and spiritually, but it has also developed within me a greater
desire to show compassion and help others who are struggling with things in
their lives.
I know that living with
chronic illness or pain can be a tremendous burden to bear, so please don't
think I'm trying to downplay the severity of what you're going through. As Patricia Fennel said "There isn't
always a silver lining to chronic illness.
Sometimes, there's just suffering."
But she goes on to say that "such suffering can transform us if it
helps us to accept who we are, warts and all."
Many I have talked to have
reluctantly agreed that their illness or issues with pain have taught them some
valuable lessons, although they readily admit it's not the way they would have
liked to have learned those lessons.
They mention learning how to slow down their pace of life, learning to be
more open to receiving help from others and realizing that they cannot live in
isolation or be overly self reliant.
Some have found ways to share their experience, by running support
groups or forums/blogs on the internet.
I realize that we'd all rather be healthy and happy, but we have to come
to realize that we have to deal with what life has given us. And, as I said earlier, the decision is up to
us as how we deal with our illness.
For many of us with chronic
illness, it can cause us to question our faith.
We question and ponder why God would allow this to happen to us. Years
of struggling with my illness and pain
issues has caused me to meet God on a much more personal level. I'd be
lying if I said I didn't struggle with
anger, frustration and resentment towards Him in the beginning. But as
time has passed, I've come to realize that everything that has happened
in my life ultimately has had a
higher purpose, even if I didn't understand it right away. It has
caused me to strengthen my walk with
Him as He is ultimately my only source of support. My husband, friends
and doctors do what they
can for me, but in the end it's God that is the one that can only truly
comfort me. Through the years I've developed
perseverance, endurance, and compassion, all while growing stronger and
closer
to God. I've learned to thank God for
the blessings I do have in my life. I'm
not so sure that I'd be as aware of what blessings I have in my life had
I not
been brought to this point. I often
wonder how my life would have been different had I been healthy and live
what I
think would have been a more normal life.
Maybe I'd be more materialistic, more selfish, more career driven and
less compassionate, less patient, and less appreciative of the simple
things in
life. Maybe being ill has had it's
benefits after all.
For some, it's a time of
renewing their faith. They may have
grown up in church and then allowed the pressures of life to draw them away
from their faith. When faced with the
challenge that chronic illness brings, returning to one's faith roots is often
a result. You're scared, not sure what
to do or what your future will hold so you return to the faith of your
youth. And you find God waiting there to
comfort you and offer you hope.
Sometimes the sense of loss
we experience as a result of our disease causes us to look inward. We are left alone with ourselves and are
often forced to take the time to know who we are, which can be a scary thing. When things go along smoothly in one's life,
it's a lot easier to be happy, kind, and friendly. But when we get ill, we find out what type of
person we can become. We can become grouchy, irritable,
unresponsive to others, complaining, angry, resentful, and overly needy. It's not a pretty picture to find out what is
really at the core of who we are but it does give us the opportunity to
change.
Being ill usually forces us
to develop healthier habits. Perhaps
it's human nature to put off what we know is good for us in exchange for what
is easy or more fun or tastes better.
Chronic illness often forces us to take a serious look at how we live,
our eating habits, our stress levels, our exercise levels and the pace with
which we live. For some, becoming ill is
a wake-up call. We realize that we can
no longer live recklessly and we need to take better care of ourselves if we
want to do all we can to help our health.
So, now it's your turn to
decide. How will you let your chronic
illness affect you? Will you allow it to
cause you to develop a "poor me" attitude or will you adjust to what has happened
to you and try to find the good things that can come out of it?