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.

RSDSA Review.