Partnerships in Care
A Consumer's Perspectives on Palliative Care
I believe that palliative care, in my case and in Puerto Rican culture, begins when we are children and babies. When you are young, your entire family supports you, including your grandparents, your aunts and uncles, and your siblings. For example, when I was young, I had a very bad throat infection. My family took me to the doctor, so of course I received penicillin and other things. But in addition to what the doctor prescribed for me, my mother gave me massages, tea, and messages of support and love, telling me that I was strong and could overcome this infection.
This understanding has helped me to be here after being diagnosed with HIV more than 20 years ago. In 1996, my T-cell count was at 6. My doctors are amazed that I am still here. I know that this is because of my desire to live, combined with my ability to bring together a collaborative relationship between my medical care and palliative care.
Another reason that I have been able to reach this point is the relationship I have with myself. I decided that I was going to live my life the way I have always lived it. I knew that I had to take responsibility for my life and my care. Getting the doctors at the National Institutes of Health to understand that my palliative care was doing as much or more for me than my medical care was a constant problem, but it is what has brought me this far.
I have developed a partnership with my own body. When I feel something, I pay attention to it immediately. You can know your own body and you can know when something is happening to it. I listen to what my body tells me. I do not let the message slip by. I take notice and act. I also keep communication open with my doctor, nurse, and case manager. You have to be very open, speak clearly, and say what you think and feel. I have also made a partnership with my personal spirituality. All of this is the reason I am here today.
