Getting Ticked Off? Self Advocacy- A Couple Of Hints

Binder and diary
Binder and diary

I’m already burned out with arguing on the phone with people. I am going to spare you the gory details of my ordeal because I am seriously frustrated and tired of whining about it.  I treasure my sanity.

I *think* I have things squared away for now.

My son has down syndrome. When he was an infant, and even into his toddler years, I ran into issues with medical professionals. I was astonished at how unprofessional people could actually be. I realized that I needed to start holding people accountable for pretty much every move they made.

I began carrying a medium sized journal that had lined pages so that I could take notes. I wrote down the names and titles of every single person I came into contact with. I requested to know who their supervisors were. I then requested to know who their supervisors, supervisor was. I wrote it all down.

I would then make brief entries into the journal about the visit. In addition to everyone I came into contact with, I wrote a summery of what was said and who said what. I wasn’t obnoxious about it at all. Most of the people didn’t realize that I was keeping track of everything.

Doing this came in handy on more than one occasion. I was able to recall information much easier by having the notes and entries that I made. If I was challenged, I was able to prove or at least shoot down whomever was trying to challenge me. When I was able to show proof of these things and could show who I spoke to, the dates and times etc my results were much better. I was taken more seriously.

I highly recommend doing this.  The truth is that these people don’t care about you or have your interests at heart the way that you do. You are your own advocate. You are in charge of you. It is your responsibility to document everything. Once I  realized that I was going down the same road as I had gone with my son, I knew that I would have to do the exact same things. Except now, I had to do it for me.

I began to document everything.

  • Date
  • Time
  • Name of person who answered the phone
  • Name of person who that I spoke to after transfer
  • What was discussed
  • Your questions
  • The answer to your questions

It is helpful to prepare before you call or arrive for your appointment. Have all of your questions written out before you speak to anyone on the phone or in person. Believe it or not, medical professionals seem to respect their patients more if they are prepared.

Don’t be afraid to let them see you documenting information in your journal. Just don’t be obnoxious about it.

My second recommendation it to get a binder to organize all of your paperwork. I have everything from my emergency room visit to my lab orders etc in a binder. I also have several sheets of loose leaf note paper in the event I need to take notes or even write down addresses to websites etc. Sometimes I scribble down information and then rewrite it letter.

It’s also helpful to keep a calendar in the binder. You can print off free calendars for each month, individually online. I use Print Free.  You’ll have several options to chose from. I rely on Google Calendar on my phone, but sometimes it’s helpful to jot down important dates or information on a calendar. Or even to document when you started a specific medication etc. You wouldn’t necessarily want that on the calendar on your phone.  Also, you don’t always want to show someone your phone, it’s simpler to have it available on paper.

While these suggestions may not seem like much, I assure you that being prepared like this will help to eliminate your frustrations. You don’t need the stress. Not only does this help you remember people, places and things, it will help you hold people accountable if you need to file a complaint.

Just trust me, ok?


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