I brought our son to the Genetics Doctor today....I cringe every time I have to see this woman. She is cold, and really ticks me off with her drab look on life. I am thankful we only see her eveery 6 months.
We went through family history, pregnancy and the issues Braden has been having. Dr. Martin reviewed the MRI results, and told me she wasn't optimistic about the "mental future" of my son. Nice phrasing, Mental Future....
Who is she to tell me about my son's mental future? How dare she put my son in a box and slap a label on him.
For years I have listened to doctors, and have taken what they say as the final answer. But that time is over....Who will stand up for my kids, if I don't? I looked at her and asked why she generalizes NF. With this disorder like Neurofibromatosis being so variable, I wondered how she could possibly know what my child's mental future would be. She had no answers, just general statistics.
I told her that parents who come into her office, are seeking not only a diagnoses of certain disorders, but they often are searching for some kind of hope...something or someone to give them a guided hand through darkness....and that the only thing I got from her was a label. One that I refused to have my son wear.
I have a close friend who has also visited this same doctor. Her son, was diagnosed with a heart condition. After leaving the office, this mother was drained of hope, and filled with fear.
Yes, it's the Drs responsibility to inform us of illness, and give all of the possible outcomes, but it's not their job to instill fear in their patients. We put our trust in these people, and just want to be treated like we are human. What about telling us of the ones who defy the odds of the typical diagnoses? Why not offer resources and places to go, to find others, who can help us find the hope we so desperately need?
Her response to me was for me to join a support group....Yeah okay. Very good advice, and I recommend this to anyone who is dealing a fearful position in life, to find support. But what I also recommend, is to not take your doctors word, as the final word. What they know, they learned from books, and general statistics. Slapping a label on their patients and filling in the check marks and sending us on your way, is NOT a sign of a good Dr.
Fight back. Ask questions. Don't be afraid to talk to your doctor. If you are like me, and got some bad luck with doctors, kick and scream until you are heard! Find someone who will listen...because there are Drs out there who really do care (thanks NIH)