is a chronic illness?
definition of a chronic illness is rather broad.
Examples of chronic illness include: diabetes,
heart disease, fibromyalgia, arthritis, lupus,
and even cancer. If it affects you for more
than a few months, it’s often considered chronic.
Despite the fact that the majority of theUS
population looks rather healthy, statistics
show that nearly 1 in 2 people have a chronic
condition. This could be an illness like cancer
or rheumatoid arthritis, or a condition such
as arthritis, migraines or back pain from a
is an invisible illness and why do you talk
to the 2002 US Census Bureau 96% of illness
is invisible. This means that these people do
no use a cane or any assistive device and may
look perfectly healthy. As the founder of National
Invisible Chronic Illness Awareness Week held
annually in September, I believe it’s important
to remind people that many of those who live
with illness look perfectly healthy and yet
may be in deep pain. It’s a time to educate
those who do not live with illness about how
to encourage a chronically ill friend; it’s
a time to bring those with illness together
and allow them to feel validated that their
pain really exists; and it’s a time to increase
communication and understanding between those
with illness and those who care about them.
there a cure?
have grown up in a society where we believe
taking a certain medication will immediately
give us our “old life” back. The truth is, there
is a new scrutiny of age old problems and chronic
illness. What you see in the commercials on
television are rarely the reality. However,
you are also the one who cares the most about
your body and your life. Trying alternative
treatments such as particular diets, acupuncture,
herbal supplements, etc. can be an option. And
if you are suffering from depression, don't
discount it. Mental depression is a chronic
illness that affects every area of you and your
family's life too. Be cautious and talk with
your doctor about it and treatment. Certain
treatments may hinder or even conflict with
medications you may be taking.
just been diagnosed with (__ fill in the blank
__.) Now what?
go ahead and have a good cry. Being diagnosed
with something you may live with the rest
of your life can be emotionally exhausting.
Give yourself an hour, or even 3 or 4 days
to get it all out. Then it’s time to start
a bit of research on the internet about your
illness, but not too much. Your best option
is to contact the nearest branch of whatever
medical organization serves your illness and
tell them you’ve just been diagnosed. They
can send you helpful information on everything
from doctor recommendations, therapies, medications,
and emotional needs.
off the internet. Don’t spend hours reading
everything you can find. It will be depressing
and some of the information will be wrong.
Other information may apply thirty years from
now, or not ever, so don’t allow yourself
to think the worst is just weeks away.
if you current doctor that helped diagnose
you will be a helpful part of your medical
team. And yes, you will likely have “a team”
of doctors in time. If you don’t believe your
current doctor will be exceptional in serving
your new needs, start asking around for recommendations.
I’ve found doctors of internal medicine a
good fit as my “general practitioner.” Also,
immediately make an appointment with a specialist.
Specialists can take up to six months to see
for your first appointment, so even if you
just think you may have fibromyalgia and your
general practitioner says, “Let’s just wait
it out a bit and see what happens to your
pain level,” make an appointment now with
a rheumatologist.. Don’t burn any bridges,
but don’t be passive about your medical needs.
who to share information about your illness
with and how much. It’s your choice, but also
recognize that people will tell others. Decide
who will be your best support through this
first phase of your illness. And be aware
that everyone you tell (or who hears through
another means) will likely have some amazing
advice that they believe they are responsible
to give to you. You will learn to cope with
this in time, but be prepared for the can
of worms you are opening.
your job options. Can you keep working? For
how long? Should you tell your boss or not?
An excellent web site is www.keepworkinggirlfriend.com
which has an extensive amount of information
about your rights and your “wants” when it
comes to your career and its impact by illness.
an online group for some personal sharing
and venting. Social isolation in chronic illness
is very common but chronic illness and resiliency
can go hand in hand. You will have days you
really need to talk to someone who just “gets
it.” An online support group is immediately
available and has few strings attached.
do I find hope?
comes in many forms for different people. For
some, they are able to find hope by waiting
around for the next new medication to be approved
by the FDA. Others search for hope by becoming
so well-educated on their illness that the obsession
can take over the rest of their life. Since
I am a Christian, I have to say that the place
I find hope is in my faith. My favorite verse
is Psalm 119:50: “My comfort in my suffering
is this: Your promise preserves my life.”
began Rest Ministries in 1997 because I saw
a lot of people like myself who were searching
for the reason why God would allow illness into
our lives. Even if you do not believe in God
you may find yourself shaking your fist at the
ceiling and saying, “Why are you doing this
to me?” You may find it interesting to know
that studies have also proven that the significance
of one's faith has shown to lower one's risk
of depressive symptoms and aid one in better
handling a stressful medical event.
am able to find hope knowing that their truly
is a purpose in the pain. I am blessed to have
found it, as I am able to encourage thousands
of others on their journey of living with a
chronic illness. Whatever you believe, you will
have to find the place that gives you true hope
and peace, and the odds are it will not come
in a bottle or through a simple treatment.
can’t anyone understand what I am going through?
just won’t get it—even those that love you the
most. I wrote a book “Why Can’t I Make People
Understand?” (www.comfortzonebooks.com) about
this very topic and the emotional and spiritual
struggles one deals with when it comes to their
relationships to other people and its impact
by illness. Have reasonable expectations. Communicate
calmly and clearly. Discuss it with those who
have an illness to better understand what is
reasonable and what is not when it comes to
others and their level of understanding.
I ever get better?
Even the doctors don’t know. Some people have
an “episode” and then go into remission for
years. Others live with pain ever day. Be a
good advocate for your health but don’t put
a hold on living while you wait to get well.
By maintaining a job, hobbies and/or relationships,
even if they are different than what you had
before illness, you will be in a healthier state
of mind and your body’s immune system will benefit.
for sources of studies and statistics quoted.)
a free download of 200 ways to reach out to
someone who is hurting from Beyond
Caseroles: 505 Ways to Encourage a Chronically
Ill Friend when you sign up for hopenotes,
a monthly ezine. Author of this article, Lisa
Copen is also the founder of Rest
Ministries and National
Invisible Illness Awareness Week.