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RSD and the Family
By Linda Lang
It
would be impossible for me to write this column without referring
to the RSD Conference just passed. The first day was exciting
enough. I got to hear and speak to doctors who are expert
in the field of RSD. They had new treatment ideas and offered
new hope for the future. I know we will all be happier when
"future" becomes present, but these doctors seemed
to suggest that the future is closer than ever before. It
was also very gratifying to see how many health care professionals
attended, knowing that they will take information back to
their practices so that they can better diagnose and treat
those with RSD. But the highlight for me was the day of the
patient conference.
I seldom hear from any of you, but
at the conference, many of you introduced yourselves and gave
me positive feedback. Now when I write I can visualize your
faces and think about your needs. I hope that more of you
will write or e-mail because I need your feedback to make
this column successful.
The ladies room can be a great place
to gather information. While there, I overheard two women
talking about how guilty they felt. One was a newlywed who
had recently been diagnosed with RSD. She felt that she was
no longer an equal in her new marriage, that the disease was
so unfair to her new husband. The other had been married for
quite a while and felt that RSD was putting a great strain
on her relationship with her husband.
There are no easy answers to the problems
that any chronic disease brings to a family. The only thing
I'm sure of is that guilt should not be part of the equation.
You did not ask to have RSD, and so there is no reason to
feel guilty because you have it. But there are ways to make
having the disease less disruptive. The most important thing
is to address the issues in an open, honest way. It is only
natural that other family members will be resentful of the
changes that RSD brings to all of your lives (Notice I said
resentful of the RSD—not of you). They may feel guilty
for having these feelings. Again, they do not have to feel
guilty. Tell them you understand that RSD affects them, too.
They will probably want to know how
they can help you. Or, they may be trying to help you in ways
that are irritating. Here are some suggestions from the Mayo
Clinic:
1. Ask them to learn more about your
pain and RSD. It is very difficult for others to imagine the
pain that you are living with. You need to tell them what
it is like. You can suggest reading material, such as the
RSDSA website or books on chronic pain, such as the Mayo Clinic
on Pain, edited by Dr. David Swanson. It is also important
for them to know what tasks you can do for yourself, so that
you can feel as independent as possible.
2. Don't let conversations always gravitate
towards your pain. It is easy to get caught up in such a discussion,
and you want to be a person who is more than just pain. You
are still you and have other things to talk about.
3. Tell them not to hover over you.
Often family members feel like they must always be doing things
to help you. Tell your family members that you appreciate
what they are trying to do, but that it is important for you
to do things for yourself.
4. Ask them to join you in your activities.
If you are fortunate enough to be able to take a walk, ask
them to join you. Having their company at a support group
or doctor's appointment can give them a better understanding
of your disease. Plan to go to a movie or out to dinner. Try
to do as many "normal" things together as possible.
This helps prevent your feeling isolated and provides valuable
sharing of up-beat activities.
5. One of the most important things
is that you let family members know they should not give up
things they enjoy doing. They don't need to totally change
their lifestyle because you may no longer be able to join
them in certain activities. This helps cut down on your guilt
feelings, and helps prevent them from building up resentments.
6. Ask that they be available to listen
to you. This provides an emotional release valve for you.
It gives a loved one the chance to show their love and support
of you. Besides, if you constantly hide your pain and refuse
to discuss it, you are using up valuable energy in a negative
way. It may also make your loved ones feel shut out and alienated
from you. Of course, complaining all the time will not make
you the most desirable person to be around. By speaking openly
of how you feel, your family can point out to you the progress
you have made (we often need to be reminded of our successes)
and may offer helpful suggestions. Try to be open to what
they have to say.
7. Make sure that they take care of
themselves. Worrying about you and your pain can take its
toll on their health. Depression and exhaustion are not uncommon
in a patient's family members. You need to encourage them
to maintain a healthy lifestyle.
Try to remember that RSD affects every
family member and acknowledge that you are aware that they
are experiencing losses as well. The more you can help each
other deal with these losses, the less guilt will be a part
of your relationship. Guilt leads to all kinds of negative
feelings and behavior. By eliminating it as much as possible,
you have a much better chance of continuing to build a loving,
caring relationship with your family and friends. Concentrate
on the things you can still do with and for each other. That
is the best way I know to help you feel like an equal partner
in your relationships.
If you have found other helpful ways
to handle guilt, please share it with us. My next column will
deal with building up your own support network both within
your family and in the larger community. If you have found
things that work for you, please let me know so we can all
share the information.
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