Enlisting Support When Beginning AP

Question:
How do you get the support you need when you are on a non-mainstream therapy, and it hasn't "kicked in yet?" How do you stay positive and determined?

Response:
These are very important questions, and the first is really two questions in one.

What is being asked is: 1) As a patient, how do I cope with my hopes and fears while waiting for the antibiotics to start working, and 2) how do I get the encouragement and help I need from people close to me who may not understand or be skeptical of antibiotic therapy?

The fact that antibiotic treatment of rheumatic disorders is not quite yet mainstream does add an extra burden as we travel the road to health. In addition to dealing with an illness, people who choose this road must deal with the caveats people have about antibiotics, and their misgivings about a less well-known way to treat these diseases. Antibiotics have a bad "rep;" everyone knows about the development of resistant organisms from the overuse of these important medicines, and most people have never heard about using them for long periods of time and for diseases like arthritis and lupus. For these reasons, you may feel you have a lot of educating to do to get people on your team. Because you're most likely not feeling well, you want to deal with people's reactions by educating them in a way that doesn't tax your already limited energy. Have a family member or friend Xerox one or two articles on the treatment, and add a reference to our web site. Anytime a family member, friend or health care professional treating you for something other than rheumatic disease asks about your treatment, give them this material and say it explains what you're doing. Also, be prepared to use your assertive skills!

People love to give you their opinions on everything, whether they're informed or not. You need to be able to head them off at the pass, if you want, and to do that, an assertive approach works best. For example, you could say, "Thank you for caring, but right now I'm following this protocol. I know this is your way of helping but I'll take a rain check on talking about other treatments." Then you might suggest to them, if they're good friends, how they can provide you with positive support. You might suggest, "Why don't you come over on Friday with a video, and we can hang out for a while, and just visit and forget about our troubles?"

And when you're having your own doubts, get on our web site, and chat with other people who are facing the same issues and share the same experiences. Read some articles about the effectiveness of antibiotic treatment. You can also use some positive self-talk. When you start feeling down, or discouraged, "catch that thought". Every mood starts with an event or a thought. So you may be feeling great, and then you might have a not-so-good day, and think, "Oh no! What if this is the beginning of a relapse? The antibiotics aren't working. I'll be in pain again, and I couldn't bear it." This thought can go through your mind quicker than lightening, but the mood it leaves behind may stay around like a strong thunderstorm! So "catch that thought" and replace it with a fact-based positive one. For example, "The road to health has bumps in it. This is a small bump, and the next part of the road will be smooth again."

All of us can take control of our interactions with others, and of our own thoughts. After some practice, it will become easier, more natural, and eventually automatic. Being in charge of your interactions and thoughts makes it so much easier to keep yourself in a positive frame of mind, and to get the kind of support you need from others.

Dr. Susan E. Grober, psychologist