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For people who don't have FMS or CFS, relating to your chronic,
invisible symptoms can be difficult. Here are a few techniques that might
help demonstrate how you are feeling:
The Kramis Touch
Neurophysiologist Ronald Kramis, Ph.D., of Portland, OR, used a shoulder
pinching approach during a January congressional testimony to help committee
members feel your pain. He asked the committee to reach back to the top
of their shoulder muscle by the side of their neck, then press down or
pinch that muscle until they felt some discomfort. For most people, the
discomfort quickly turns into pain. This pain may radiate up your neck
and/or across your shoulder blades. Even after you release this harmless
grip, the pain can linger for five minutes. No cuts, no bruises, and no
visible disease-just lots of pain. This is how many FMS/CFS patients feel
all over their body. Dr. Kramis' testimony can be viewed on our web site
or mailed to you as part of our "Advocacy Packet."
Ever had the flu?
Most people have experienced the unpleasantness of the flu at one time
or another. The problem is, once their flu bug is gone, people can't seem
to remember any physical pain or discomfort. The next time someone you
know gets the flu, but they fail to grasp how you feel everyday, tell
them that you feel like you have a never-ending flu. Since pain thresholds
are often lowered by viruses, just press on a few of their aching muscles
to leave a more lasting impression!
Hold that contraction!
Ask your friend to squeeze his/her shoulder blades together and then hold
that contraction for several minutes. The tight, knotted feeling that
develops in their muscles is similar to the pain and muscle fatigue that
you feel all the time.
How was your first day at the gym?
Anyone who has just initiated a new (and often too aggressive) exercise
program will wake up the next day with lots of muscle pain and stiffness.
A person can also feel over-exhausted if they weren't careful to pace
themselves. This post-exercise phenomenon has been coined the "Tin
Man" syndrome by FMS patients. For healthy people the soreness wears
off after two weeks of continued exercise; what a comforting thought!
Just remind your friend on the second day of their exercise program that
you have to deal with this achiness all the time.
Comebacks for Hurtful Comments
With invisible conditions like fibromyalgia syndrome (FMS) and chronic
fatigue syndrome (CFS), people are bound to make insensitive and hurtful
remarks. They can't see your illness and they don't understand your limitations.
Psychotherapist and rehabilitation specialist, Don Uslan, MA, MBA, CRC,
of Seattle, says: "ln my practice, everybody, both young and old
as well as people with other chronic diseases that can't be seen, struggles
with this issue.
The problem of other people's reaction to your illness, according to
Uslan, is a double-sided issue. One side of this complex issue is your
level of confidence in your medical diagnosis and the limitations it imposes
on you. If you are shouldering any doubts about your capabilities, this
can impede your ability to swiftly diffuse unfriendly remarks-which are
on the other side of this issue.
Assuming that you are confident about your limitations, what's the next
step? Uslan has patients ask themselves: Who is important to me and where
do I have the greatest return on investment (as far as the relationship
goes)? Your spouse/partner, children, parents, employer, and a few others
may comprise your inner circle of people who are most important to you.
Everyone else is on the outer circle.
"For several people in your outer circle, it may be worth it to
make a modest effort toward educating them about your illness," says
Uslan. Yet, you have limited energy and you may wish to concentrate on
the people you love first.
Following are specific life situations and Uslan's recommendations on
how you might respond to them--to minimize hurt feelings and to improve
the other person's level of understanding.
Spouse/Partner
Hurtful comments can be made by your partner because
they feel like their needs are not being met or that they are being taken
advantage of when it comes to the housework. Some things need to be renegotiated,
while other problems require better communication.
Example: "I wish things could be the way they used to be."
If you and your partner used to engage in all kinds of sports and
activities together, and you are no longer able to do this, then you may
want to sit down with your partner and say: "Honey, I have six good
hours a day. Three of it's spent with the kids, two of it's cooking and
doing the chores, and I need an hour by myself. Let's figure out a way
that we can spend more time together, but after that, I also want you
to enjoy yourself. Play tennis with your friends. I'll tag along and watch
you play whenever I can, but please have some fun ... it would really
make me happy."
Example: "I do all the housework around here and you do nothing."
If this comment was made off-the-cuff (or something else that implies
that you are not carrying your load), then Uslan recommends that you say:
"I wish you would be more direct with me rather than to zing me like
that. I'm trying as hard as I can. It's not my intention to take advantage
of you. I've been in a flare-up for days now and I appreciate everything
you're doing. I can understand why you are upset; I'm upset too. Maybe
we should just accept that we will have a more cluttered home. You're
exhausted and I'm exhausted, and one of us with FMS/CFS is enough."
If the comment made by your spouse about doing all the housework is said
in the heat of an argument, Uslan recommends that you say: "you know
that's not true and it was a hurtful thing to say. I would like to have
this conversation when we are calmer." Then try using the previous
statements once things have settled down.
People at Work
"There is a line between 'my co-workers don't get
it' and the law, which is the American's with Disabilities Act (ADA},"
says Uslan. "The ADA says that you can receive no harassment or hostile
comments in the workplace because you have an illness or disability."
So if your co-workers are expressing resentment that you have time off
for your illness or that you have special accommodations, that's not allowed
under the ADA law. Uslan urges you to bring these types of issues up with
your employer because it is their legal responsibility to handle them.
Now, here is how you may deal with the people who seem to be well-intentioned
but they just don't understand your illness:
Example: "Gee, you look wonderful today You sure don't look tired
or in pain."
"People behave like kids with their parents sometimes,"
says Uslan. "We test each other, but it is not a win or lose situation;
it's a test of your confidence." If this person is important to you,
you have to pass the test and here is what you might say: "I'm glad
you think I look good, and frankly, I am feeling better this week. As
you know, though, this condition of mine has its ups and downs."
You may wish to spend a few minutes further explaining FMS/CFS - it all
depends upon how much time you want to invest in this person.
People in the Outer Circle
Similar to the above example on co-workers, it is in
people's nature to test you. Whenever comments are sarcastic or insensitive,
be prepared to respond. Don't let others simply get away with hurting
you.
Example: "Well! How are we doing today?"
Perhaps someone is really wondering if you are "being all that
you can be." Uslan says that sarcastic comments like this may be
approached by saying: "Are you asking me how am I doing or do you
want to tell me something directly? If you are asking about my health,
thank you for being concerned. The truth is that after working all week
long, I just haven't been able to clean the house."
Example: "I saw you playing around with your kids (or grandkids)
in the front yard yesterday. Guess you must be doing much better."
Perhaps a well-meaning neighbor who does not understand that you can have
good and bad days. Uslan says that if this is a good neighbor, they often
just need a dose of reality: "Yes, I really enjoyed playing with
my kids. Unfortunately I woke up stiff and achy this morning. This darn
condition of mine always flares up the instant I overdo it."
Example: "You look great! You're just using your illness to get
out of going to the party (or some other event)."
"This is a hostile statement," says Uslan. He recommends
replying: "I resent that I am not using my illness as an excuse.
I'm glad you think I am looking great, but I don't need to prove myself
to you." Uslan claims, "Many people will calm down after that
and say that they are sorry." They might even add: "I guess
I just don't get it. You say you are so sick and yet you look so well."
This gives you the opportunity to respond: "That's the problem I
struggle with all the time. Still, I'm not feeling well, and I need to
stay home and take care of myself."
Example: "You're so lucky, you don't have to work."
This can apply to patients not working or those who have had to switch
to a part-time job or to a less demanding position. The point is, this
person is being unsympathetic and they need to be corrected. Here's what
Uslan recommends: "I would rather be working any time. I miss my
old job. I miss the socialization, the gratification, the income, the
health insurance. I had challenging projects and great promotions-I'm
not getting any of that now."
Consider modifying the above verbal "comebacks" to suit various
situations that occur often in your life. "Patients don't need to
walk away from people's remarks feeling angry and hurt," concludes
Uslan. If the person really matters to you, find a way to say something
that will improve your level of communication and understanding with that
person.
Medically reviewed and edited by Don Uslan, M.A., M.B.A., C.R.C.
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