Becoming Your Own Best Advocate

When you’ve just received a life-altering diagnosis, it’s common to be shocked and dismayed at the array of powerful drugs that may have been presented as the only options for treatment. If you’ve been unwell for some time, it’s possible that you’ve exhausted a number of drug options, because they no longer work or they produced intolerable side-effects. Whether you are newly diagnosed or someone with long-standing rheumatic disease, antibiotic protocols (AP) is a legitimate treatment to explore.

When first hearing about AP, it can be confusing because this treatment was never offered to you as an option, even though minocycline is approved by the American College of Rheumatology for use as an off-label disease-modifying anti-rheumatic drug (DMARD). So it can be a relief to discover Road Back Foundation (RBF) to help you locate an AP doctor, to provide patient-friendly educational resources and a community where peer support can be found.

After feeling filled with the hope and comfort that this simple therapy has worked for many rheumatic patients, your expectations may soon be dashed, if your doctor has then remarked that AP is an old treatment and there are more effective options today. You might have also been told that if you choose AP, you can expect to be in a wheelchair within a year or so, or cautioned that you will turn blue, wind up with other autoimmune issues, that the treatment is only used in early, mild cases, or puzzlingly, that it’s only used as a last resort when all else has failed.

Sometimes doctors will reluctantly prescribe the treatment for a short trial period, after which you are advised that you will then need to go on to something stronger. To add to this confusing picture, family or friends may not be in favor of a treatment that is not fully supported by your doctor and this can increase stress levels, especially if you are in great pain, feeling exhausted and brain-fogged. The picture becomes even muddier when you find plenty of anecdotal evidence of successful patient experiences with the treatment, yet few conclusive studies to support its effectiveness and use in clinical practice. AP has been described as a therapy that is not for the faint of heart. It is a slow therapy with no overnight miracles and remission can take 2 to 5 years to achieve. Conversely, all the current medical literature insists that early, aggressive treatment of rheumatic disease is essential. This can present you with a dilemma:

“Do I go with the drugs that might provide immediate relief, but come with the potential for substantial side effects or, by comparison, a fairly benign antibiotic that is slower to take effect, but carries the hope of sustained remission?”

When you consider these things, it soon becomes evident why it’s important to become your own best advocate when choosing AP as a treatment. Self-advocacy includes learning about the therapy, understanding the potential infectious and environmental causes or triggers of rheumatic disease, and proactively seeking out a doctor to support your treatment choice. This may involve considerable time, effort and personal expense. It may also mean becoming acquainted with multiple measures to support your overall health. This is no easy thing when you are feeling unwell and unsupported. Yet, there appears to be a consistent pattern of treatment success experienced by those who choose AP and are determined to self-advocate.

Keys to becoming your own best advocate

  • Knowledge is Power. A well-educated and informed decision about AP will enable you to choose an appropriate medical professional to provide support and partnership through any treatment challenges. In addition to a supportive medical professional, familiarize yourself with the recommended reading, educational and community resources on this website.
  • Know yourself. Know your communication strengths and weaknesses before discussing AP with your doctor. Do you find it easier to communicate verbally? Does it help if you make notes or take along printed material supporting the points you wish to discuss? Having the confidence and ability to communicate your treatment decision will grow by having an understanding of its rationale for use. Allow yourself the necessary time to absorb it. This knowledge will help you express your preferences to your medical providers, family and friends.
  • Be prepared. Appointments with medical providers are brief encounters. It is important to be prepared for the meeting and ready to produce information that supports your request. Instead of asking questions that result in simple “yes or no” responses, approach your medical provider with the aim of engaging in positive dialogue, knowing that you are well-prepared to state your treatment preference and able to effectively respond to other options that may be proposed.
  • Be specific. It can be overwhelming to make a case for a treatment preference with a medical provider. Doing your homework, in advance, will enhance your ability to concisely express yourself and can help to avert feelings of powerlessness.
  • Be assertive. It is important for you to assume the role of being a partner in any treatment decisions. Assertiveness results from the confidence to express yourself. It is the result of being well-informed about the subject you intend to discuss and will allow you to state your needs and preferences clearly.
  • Be an engaged partner. Medical providers are highly educated consultants who are paid to provide patients with professional insight regarding health concerns. They are employed by you and ideally you will be engaged as a partner in making your health decisions. As with any service provider, if the service does not meet expectations, you retain the option of seeking your preferred services elsewhere.

You may like to read the book, “Gone in a Heartbeat: A Search For True Healing,” by Dr. Neil Spector, a highly-respected Duke oncologist. It is a moving and powerful story that exemplifies the importance of patient self-advocacy and getting educated in order to make fully-informed healthcare decisions, collaboratively with medical professionals, in the pursuit of wellness. Having suffered from heart failure as a result of undiagnosed Lyme disease, Spector says,  “To recognize that we are in control of our own bodies and destinies can be a powerful step toward true healing.”