By Dianne Shaw, Past President VF
January 2006
Self advocacy. Not a new idea to vasculitis patients. Self advocacy is about helping the medical system work well with you and for you.
Because our diseases are rare and difficult to diagnose, locating and developing a strong relationship with physicians who know about and routinely treat these diseases is key to successful disease management. In our situation, the relationship with our doctor(s) is probably more collaborative than most. As patients, we learn what steroid dose works for us, what signals indicate the possibility of a flare. Communicating this "body knowledge" is critical to managing our diseases.
For example, in my experience with vasculitis, there have been times that I just felt something was wrong, even though tests did not (yet) confirm it. Not feeling well, joint pain, lower exercise tolerance. When this happens, my doctors trust my judgement- and I have on occasion been thankfully wrong that a flare was imminent- and work with me to develop a plan of therapy. Teamwork is essential.
Many of us keep medical diaries, an excellent idea, especially when you're asked, "has this happened before, when did this last happen or what steroid dose works best for you?" Also, since most of us have had countless procedures, steroid tapers and numerous rounds of therapy, keeping a record is helpful. With steroids, "chemo brain" and aging, my memory can use the factual help that the medical diary provides.
There are times when I am going into a flare or am on a large dose of steroids that my self-confidence dissipates. I don't have the courage to stick up for myself, Also, when I am in the hospital and am quite ill, self advocacy is a bit more challenging. I remember one stay when the team treating me was determined to send me for a procedure that my doctor had told me was not necessary. I had to have him paged so that he could tell this team that the treatment plan no longer included that specific procedure.
With me at that moment during my hospital stay was my sister, equally determined that my doctor's orders would be followed. An effective self advocate seeks and values the support of family and friends. They help you remember medical history, tell you jokes, listen to you and buoy you up when things are tough. An Internet listserv can also provide much-needed feedback and support. I see it time and time again.
Expert care is critical. The Vasculitis Foundation has 29 medical consultants, all experts in the care of vasculitis. Not every patient is able to visit with these physicians, and many patients receive excellent care from community or academically based doctors. I recently spoke with a young man whose airway was narrowing making it difficult to breathe. He ended up in a hospital where the doctors had not performed the type of surgery he needed. Our consultants communicated with his physician, and plans were then made for him to have the appropriate surgery for his condition. Self advocacy at work - getting the expert opinion for the best care. Other patients ask their physicians to talk with the VF consultants, availing themselves of the latest knowledge while having their care provided closer to home.
Two strategies to keep up with current vasculitis practices and research are: (1) read the Vasculitis Foundation newsletter; and (2) attend the biennial symposium. Both the newsletter and the symposium offer the best ideas and thorough discussion of everything medical. Our consultants author articles for the newsletter and attend the symposia where patients and families have a chance to hear from them about the latest advances and to ask questions of these experts. Those of you who have the pleasure of knowing Bruce McDonald value his constant web surveillance about vasculitis and posts to the WG Internet Mailing List. "Dr." Bruce is the most knowledgeable patient I know.
Self advocacy can help you have some control despite the roller coaster ride of these diseases. Knowing your medical history through a medical diary, seeking the support of family and friends, learning as much as you can about your illness and receiving expert care - all make you a leader in your team of care.