By Issadora Saeteng
with assistance from
Vanessa Malcarne, Ph.D., San Diego State University
Dealing with a chronic illness like
Scleroderma can lead to feelings of being out of control, being
confused about what is happening, and worries about the future.
In reality, everyone has these feelings to some degree, but for
those of us with these ongoing illnesses, it is sometimes more
in our awareness than for others.
There are many different symptoms we
experience, but one common sensation we all deal with is pain.
It can be pain from the disease, pain from tests and procedures,
and even emotional pain from having to deal with the illness in
addition to the demands of school, activities - the list goes
on. Yet, even in the case of pain, where there seems to be so
little we can control, much can be gained by using the powers of
the mind. While there are a lot of medications to treat pain,
the side effects are usually unpleasant along with a host of
other problems. Besides, who wants MORE medicine!? Even for
those of us that do take medications to manage pain, many times
we still need more relief. The good news: There is hope!
There are techniques that allow you to use
your brain power to help manage different types of pain. What do
I mean by brain power? Brain power is when we use our brain, the
powerhouse manager of our body, to help manage pain and other
challenges. You can use your brain to create distraction from
pain and reduce the intensity of it. Also, you might be able to
calm anxiety over painful procedures, test and other
How do I use my brain power to help with pain?
One of the first major steps in is learning to breathe. I know
you’re thinking, “What do you mean, I need to learn to breathe -
I already know how to breathe!” While we all can breathe, most
of us have unlearned the way we breathed as babies. Ever watch a
baby or toddler breathe, with their little tummies sticking out,
moving up and down? That is deep breathing, and it’s something
we seem to forget how to do as we grow up. As we get older, we
have the tendency to breathe more in our chests. Check it out by
placing a hand on your tummy and on your chest. Breathe normally
and see which hand moves most. Now try breathing through your
nose if you can, or at least try to breathe from deeper in your
stomach (from your diaphragm) and you’ll see that your stomach
will move up and down, rather than your chest and shoulders.
This way of breathing is good for your lungs and is calming. Try
taking several breaths like this and counting slowly as you
breathe in and out. This is a quick method for calming down your
pain and tension. Many times when we feel and/or anticipate
pain, we tense up, breathe in a shallow way, and tighten up our
muscles - this all can increase the pain feelings! Breathing
slowly can help stop this reaction.
Another thing you can do is use your brain
power to travel to other places. After calming your self with
breathing, close your eyes and imagine a calming place like the
ocean, mountains, camp - whatever makes you feel happy and
relaxed - and think about what you see and feel, and how it
looks and smells. Pretty soon, you are off on a bit of a
vacation in your mind. If you have trouble doing this by
yourself, people can help you guided imagery by assisting you in
your adventure – they can describe a calming place while you sit
back with your eyes closed and practice your deep breathing.
Sometimes tapes can also have imagery to help you. It’s similar
to having a blank sheet of paper and deciding what you want to
draw or having someone ask you to draw a house or the ocean,
etc. It is still your paintings or drawing but someone else can
help you with suggestions along the way. Find what works for
Finally, you can use your brain power for
distraction to work through medical procedures and other painful
situations. Distraction means using your mind to concentrate on
something besides the pain or procedure. Distraction is often
used in many hospitals through video games, virtual reality, and
story telling. Many times, it helps to have someone to help you
with distraction but you can also do it yourself by focusing on
a picture, a favorite stuffed animal, watching television, doing
a puzzle, or anything else you think might help take your
attention away from painful sensations. You can talk with your
doctor, nurse, or other people who are helping you with your
scleroderma about different ways of distracting yourself during
painful medical procedures. Sometimes they will have good ideas
about how they might help to distract you.
So, as you can see, there are lots of
different ways to use your brain power to help deal with pain.
Some people like to use mental imagery while others use
counting, music, and other methods. You have to experiment to
find what’s best for you. You can even buy CDs or tapes that
help teach you how to relax and distract yourself, and also
people like psychologists and social workers can teach and
create tapes individualized to your pain management needs.
While the above methods might not take all of
the pain away, they can make it more manageable. Like anything
else, the more you practice, the easier it is. From my own
personal experience, I have a love for space, and I have
pictures from NASA, photographs of older space shuttles and
Hubble telescope findings. When I go to sleep at night and wake
up, I look at my pictures next to my bed and imagine going into
space. I do my breathing and think about how it might feel to be
an astronaut. These brain power adventures helped me through
many nights of pain and mornings of stretching so I could go to
school each day. Also, I have been able to use poetry, painting,
drawing, and journaling to help me deal with my pain. I often
listen to music when I am getting painful tests or physical
therapy to give my mind another place to focus besides what’s
happening to me.
I hope these ideas help you use your brain
power to manage pain too!
Helpful resources about pain management:
The National Pain Foundation site on pediatric
Arthritis- New South Wales:
Bandaides and Blackboards (just a fun site for
kids/adolescence/adults with chronic illness and also had pain
Pain and your child or teen: (University of
Michigan health care system) site with multiple types of pain
management tools and links on distraction, breathing, art
therapy and more:
Issadora Saeteng is a health
journalism intern completing her fourth year at the University
of California, San Diego, where she is majoring in Human
Development. Issadora has juvenile onset rheumatic disease, and
is planning a career in Counseling Psychology. Issadora works
with Dr. Vanessa L. Malcarne, Professor in the Department of
Psychology at San Diego State University.
Please keep in mind, this webpage is for your information only.
Please check with your child's physician for any treatments.
For more information on Juvenile Scleroderma, contact:
Juvenile Scleroderma Network, Inc.
1204 W. 13th Street, San Pedro, CA 90731
Tel: (310)519-9511 (Pacific Time)
Speak to another JSD parent for emotional and logistical support
provided by home-based JSD volunteers. For medical advice, please
contact your child's physician.
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