Local Brain Support Network member Denise shared this article from the March/April 2009 issue of the North Carolina Medical Journal. It was written by Tiffany Christensen, who has cystic fibrosis. Tiffany offers advice and insights to those coping with a long-term illness.
Tiffany addresses being a “medical advocate” and an “emotional advocate.” She notes that:
“Perhaps the greatest irony of illness is that, in today’s complicated health care system, when a patient is at their worst is exactly when they need to be at their best.”
So the patient can either learn to become his/her own medical and emotional advocate or find others who can perform these roles.
Denise was particularly impressed with Tiffany’s comments about caring for one’s emotional state, not only from the patient’s point of view, but also the care partner’s. Tiffany writes:
“When I was gravely ill with chronic rejection, I sought out the counsel of a therapist. I have never made a wiser choice in my life. There are so many intense emotions that come with illness: feeling like you have lost your identity, the uncertainty of tomorrow, the deep loss of purpose. I was surprised to find that my family and friends were not the sanctuary for these emotions I once imagined they would be. They love me deeply, but we immediately began to protect each other from our pain; we all worried about burdening the other with heavy emotion. Being an emotional advocate might mean being the ‘safe person’ for someone experiencing a health crisis. It might be the patient herself setting boundaries with those activities or individuals which cause them undue stress. It could be as simple as creating a visiting schedule to avoid the exhaustion that can come from having too many visitors when you are trying to recover. Emotional advocacy goes hand in hand with medical advocacy; I have found it nearly impossible for one to succeed without the other.”
Tiffany offers three steps for dealing with a medical decision you find overwhelming, rushed, or with which you are unclear or uncomfortable. These steps are:
1. Slow down the conversation. Say “I’m sorry, I’m feeling overwhelmed. Can I take a moment?”
2. State your concerns and ask for clarity. Make the professional’s recommendation into a dialogue, not a decree.
3. Propose your solution, such as asking for a second opinion, or going with the least invasive procedure, first.
Here’s a link to the article:
classic.ncmedicaljournal.com/wp-content/uploads/NCMJ/Mar-Apr-09/Christensen.pdf
Finding Your Voice as a Patient Advocate: A Bed’s Eye View
North Carolina Medical Journal
Volume 70, Number 2, March/April 2009
by Tiffany Christensen
Happy advocating!
Robin