Discouraged By Others

Question:
I have had RA for 8 years and am on many medications that are not helping and have done some damage. I've read about antibiotic therapy but my doctor and family are discouraging me from looking into it. I am desperate for some help. What can I do as I feel so alone in this?

What a wonderful question! Not only will my answering it hopefully help you, but responding to it will give me the opportunity to mention the importance of assertiveness, and the difficulty of maintaining one's sense of competence and control when living with a chronic illness

Reading between the lines, I get the sense that you are close to your family and have a relationship with your physician, and that you're afraid to jeopardize either of these important supports in your life. Also, because it is very common to develop feelings of helplessness and dependence when ill, I would guess that you're not feeling as confident and as ready to take on challenges as you might if your health were better. However, when coping with the challenges of RA, or any difficult condition, you need more than ever to be your own advocate because you know your body and its response to treatment better than anyone, no matter how much they care about you. Also, if you are like many people, you are probably fairly knowledgeable about treatment options, and in the case of antibiotic therapy, are likely to be better informed than the average physician or rheumatologist.

These two areas of expertise alone should help give you the confidence you need to look into, and perhaps commit to, antibiotic treatment. And importantly, too, use your special knowledge of your body and RA to give you the confidence to speak assertively, but lovingly, with your family, about your desire to try a new treatment. Speaking assertively doesn't mean arguing. Nor does it mean giving up, and agreeing with others. In fact, assertive communication is calmly stating your opinion, in the form of "I think" or "I believe" or "I choose" (any statement that begins with "I" is just fine). The goal is to express your point of view, and for others to hear it. This is no guarantee that your family will agree, though; speaking assertively only assures that you will be heard and that they will know how you feel and why you feel that way. Also, it is important to keep in mind that although it's nice to have people you love agree with you, it is also possible (and common) for people to disagree with friends and family. But remember, it's your body, and although you may feel weak physically, you need to muster the emotional strength to do what you believe is best for your health. Only you have to live with the consequences of your decision, and I suspect that you will feel best about yourself if you remain true to yourself and your convictions. Self-respect is based on that, and is a wonderful antidote for the helplessness that often accompanies illness.

You didn't mention why your family, or your doctor, are discouraging your seeking antibiotic therapy. If they need facts, speak with them, and download information from The Road Back Foundation web site to share with them. If they have fears, find out what they are; usually knowledge minimizes fear. If they think it's not an effective treatment, print out some articles that describe the clinical trials with Minocin. But above all, believe in yourself, and your right to determine how your disease is treated, which raises a very important issue. Are you unsure about antibiotics for your RA? If you are, other people might pick up on your doubts, and reflect them back to you. In that case, contact other people on the web site who have used the treatment and learn about their experiences, their successes, and their challenges. It is most important that you be convinced that this is the treatment you want because the road back can be bumpy at times, as all paths to health are, and you need to have the strength to stay the course.

Finally, I want to address traveling the road back alone. If you win the support of your family, that's wonderful. It's always nice to travel with someone. If your doctor supports you, that too would be wonderful; you can maintain your relationship with him/her. However, if you need to take the trip alone, your family may well join you on the road at some point, especially when they see the progress you're making in your travels, and how excited you are about what you're experiencing. Every trip to a new place needs a guide. If your doctor doesn't want to lead you, get the name of another doctor who has taken others successfully down the road to wellness. Remember, too, to keep a journal of your adventure. It will serve as a valuable record and reminder of where you were when you started, and how far you've come.

Bon Voyage!

Dr. Susan Grober, psychologist