Posted on July 16th, 2012 by Admin
Editor's Note: Erin R. is a patient/caregiver who submitted the following essay as part of the Mayo Clinic Center for Social Media Patient, Caregiver Scholarship Contest. To vote, simply use the Facebook "Like" or Twitter "Tweet" buttons at the bottom of each post to share or leave a positive comment. The top vote-getters will be finalists.
Eight years ago I married my husband on a perfect Saturday in a beautiful church surrounded by family and friends. The following year we decided to start a family of our own. After five years of trying we went to a fertility specialist and exhausted almost every possible solution. The time came when we could no longer afford to keep putting money into something that wasn’t working. Private adoption is expensive.
Well meaning co-workers, friends and family said “everything happens for a reason.” People only say that when things are bad. Most people are able to have their own children so they never fully understand what it is like for those of us who can’t. That is just how life is. If I were in their shoes I probably would have done the same thing thinking I was helping when unintentionally I was causing even more pain. I am an optimist, but in order to cope one sometimes has to be a realist.
I switched career fields and I manage marketing for a federally qualified health center and a health department. One of the many things I love about my job is the majority of my co-workers are in the medical field so when I told them we weren’t able to get pregnant, they understood.
My husband and I both longed for a family and we also realized that there was a chance we would never become parents.
Then something wonderful happened. We heard about an adoption program that was very affordable. We started the application process and within a few years we received our wonderful baby boy. I finally believed that everything truly happens for a reason. If we had to go through everything to get him then it was well worth the paper cuts and countless home visits.
We had thoughtful case workers who truly helped us. In order for an adoption to be finalized one must provide foster care for six months. Our baby had lived in a foster home prior to coming to live with us and we were supposed to receive a “Life book” with his medical records, health histories, etc. We never received that book. We didn’t know his family health history until we had him for eight months. He is a special needs child so when we would go to see specialists I dreaded filling out the family health history because I didn’t know the family health history. (I had asked for it numerous times, but our case workers didn’t have the information at that time.) I had to leave a lot of blanks on the health history forms. It bothered me when the nurses, doctors and surgeons would treat us like we were crazy for not knowing our baby’s health history. Or when they would ask how my pregnancy was or how his birth was when I had clearly written on the paperwork and told them we were in the process of adopting him. It proved to me that medical school focuses on the learning of words and not listening skills. When they don’t listen they aren’t properly caring for their patients.
This experience has made me an advocate not only for situations like ours, but for the rights of patients. I have a conviction that in addition to learning the 16,000 plus new words at medical schools they also need to be taught how to listen. One of the worst feelings as a patient is to feel like you no one is listening to you.
This conference will help me both professionally and personally as I continue my crusade for the necessity of listening to patients. Social media is an avenue where communication can be positive or negative – if someone doesn’t like the way they were treated they can do damage with social media. However, there is also wonderful potential for medical providers to relate to their patients and share their wealth of knowledge. At this conference I would love to learn ways for our organization to find other avenues to listen to our patients. Because the worst thing, as patient and a caretaker, is feeling like you weren’t heard.
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