Living with Chronic
Illness
If there is
anything that a person living with chronic illness can tell you about, it’s
changed plans. This can be especially true around the holidays, when life is
busy, stress is high, and family demands seem to increase. However, a flare-up
doesn’t have to ruin your holidays or your time with friends and family. Over
the past 5 years, while living with Ulcerative Colitis combined with rheumatoid
like joint pain, I have learned some strategies and attitudes that have eased the
stress of a flare-up and helped me to adjust my plans and expectations. It has
been my hope that what I have learned can help someone who is newly facing a
diagnosis or is supporting a loved one who is.
When I first
received my diagnosis, I handled it in an unhealthy way. I rebelled. I told
myself that I was stronger than the disease and that I could push through it. I
believed that beating it meant carrying on about my routines as though I felt
healthy. When exhaustion and a hospital stay finally demanded that I slow down,
I found myself rethinking my perspective.
The first
thing that struck me was how tied to time I had become. My first response to
the news that I was being admitted was “I don’t have time for this,” Of course,
this had been my default response to all things UC related. I don’t have time
to be sick. I don’t have time to rest. I don’t have time to eat right.
Suddenly, in the hospital, I was forced to “have time for this.”
I suppose my
habit of being tied to time was something that I had formed a long time ago,
perhaps one that we all have developed to some point. It’s something that I
hear all the time, from the sick and the well. People
with the flu wail out “But I don’t have time to be sick!” Parents feel they are failing
because the laundry is not done. Workers eat lunch at their desks because they
have GOALS to meet. Mourners express regret for the things they had meant to do
with their departed loved one.
My relationship with time had to
change. I began to understand that time spent differently than planned is very
often still time well spent. Often, when we do not meet our own expectations
for the time we are using, we feel like we have lost something. But in
reassessing, we usually find that we have used that time for things that were
equally as important. Perhaps you did not get your laundry done today, had to
skip the gym, or missed a day of work, but your took care of your body, mind,
and spirit. Even on our well days, this is important to remember. Time spent
differently is still time well spent. Dinner may be late, but did you enjoy
that extra hour with your favorite book? The trip you planned with your
departed loved one may not have happened, you still made memories that will
serve as a shield against grief. In looking back, we often find that what we
have done is enough and that it was meaningful to those who shared that time
with us. It’s far too easy to forget the valuable things we have done with our
time when we focus on what we have not done.
Interestingly
enough, I also had to learn that procrastination doesn’t pay. I make my periods
of wellness productive and organized. If I get sick, it is less stressful when
I know that my work is well organized enough that anyone in the office can find
it and take care of anything that needs to be done in my absence. My daily
routines are eased because I have kept up with chores. This doesn’t mean that I
never get behind, but I don’t live in constant anticipation of chaos.
I have also learned to accept the gifts that
people give. People don’t always show their love to us in the way we would
prefer, but they do show it in the ways that they know how. This can sometimes show
up as giving advice, lecturing you on your diet or habits, over-assisting, or
staring at you worriedly. Accept the gift for the spirit in which it is given.
Resenting the gift creates stress, for you and on the relationship with the
giver. If you really can’t accept what they are offering, let them know what
you need. Most of the time, people want to help, but don’t know how. I keep a
list of things that I need to delegate to others at work should I be absent and
a list of opportunities for people who offer to help. I rarely have to use the
lists, but it eases the stress of anticipation for me and creates clear choices
for those who support me.
Another important thing that I learned was to
separate my identity from the disease. In the beginning, the UC was always in
my mind. I felt unfamiliar with my body because, now, it wasn’t what I had
always thought it was. Perhaps I wasn’t who I thought I was, either. I
struggled with fear of the future, depression related to my self-image, and a
sense of betrayal. It took a while for to re-align my self-image and realize
that I was still me. I have a friend who says “I have MS; it doesn’t have me.”
She is aware of the disease, but is aware of herself outside of it. She’s a
weaver, a creator, a mother, and a blogger. Her MS is there, but she is the
identified one. I have learned to identify myself through who I am rather than
what my disease has given to me.
This change came with acceptance. Acceptance
isn’t something that we are naturally inclined to follow, but it is something
that is necessary for our growth and health. “It is what it is,” has become one
of my favorite sayings. Through this, I accept the days that I must do less. I
accept the times that I must take medications that are inconvenient. I accept
that perhaps some of my goals must be re-evaluated. Today, I am sick. I cannot
live this day as though I were well. I must accept the limitations that are put
upon the day. Resentment, denial, and disappointment will create stress for me.
Acceptance frees me to reassign my energies to where they will be most useful.
I won’t be mowing the lawn, but I may refocus energy into healing, spiritual
restoration, writing cards, reading a book, talking to a friend. Just as time
spent differently is not time wasted, energy spent differently is not energy
wasted.
One of the most
important things that I learned was not to waste the experience, but to use it
for good. Rick Warren, Pastor of
Saddleback said something following the sudden suicide of his son that has
stuck with me. He said, “I’m certainly not going to waste this pain. One of the
things I believe is that God never wastes a hurt and that oftentimes your
greatest ministry comes out of your deepest pain.”
It may be
that a chronic illness changes little in your journey; it may be that it
changes the entire course of your life. It may mean new career choices, new
living arrangements, loss of particular dreams and goals. Here is where you can
let the disease kill your spirit or you can turn it into a source of strength.
Those who thrive have chosen to use the experience for good. There is an old
saying that I have applied to my life “Those who cannot do teach.” I have taken
it as a challenge and an opportunity, rather than the insult that we usually intend
it to be. Are you unable to enjoy certain hobbies or contribute to your
community the way that you want to? Teach someone else what you have learned. The
world is looking for teachers, mentors, and supporters of ambition and your
experience has equipped you uniquely to give, serve, and teach.
In the large
things and the small, be gentle with yourself, patient with those who surround
you, and grateful for the good things- even the ones that come in disguise. Set
new goals that align with your capabilities and stay busy. Accept the days as
they come and use your energies wisely. Find something to contribute to your
world, remembering that a giving person cannot be anything but a grateful
person. You will find that you can say along with my friend “I have this
illness; it doesn’t have me.”
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