Can Anybody Hear Me, Is Anyone Listening?

Sitting in my monthly chronic pain appointment, I heard a patient start complaining how long the visit was for the person in front of him. When it was his turn, it took him more time to walk in to the office than it took to be handed his script and walk back out. He looked at me and winked/ smiled implying this is how it gets done. My turn came and walked in, handed the Dr results of my most recent labs along with dates and times of scheduled appointments with new specialists. The Dr looked over the labs and pretty much stated he didn't understand the results. I spent time explaining what I was told the results indicated by the ordering physician then the reason for the referral to another specialist. He almost got upset with what I said and started arguing that none of this made any sense. Meanwhile I am trying to bring his attention back into focus on me, why I was there and the issues he needed to address regarding my pain. After 30 minutes of unsuccessfully reaching this goal I just nodded in agreement stood up to reach for the prescription and wish him a good month. He never heard me try to explain the issues having with my current form of medication which fell under "his" speciality.

On my drive home from that visit my thoughts just kept centering around the fact I AM ALWAYS DISAPPOINTED NOW WHEN I LEAVE A DOCTOR'S OFFICE; my new norm. Are we too specialized? Every speciality has a sub-speciality and everyone seems to clearly know their boundaries. OMG if you mention anything that falls outside of those parameters you quickly get reminded that doesn't fall under him/her. Fact is, most aren't actually listening to what we are saying anyway. It's almost like they are trained for "buzz" words that relate to their field. Spent over 2 hours with a Neuro who asked me 3 times in less than 45 minutes how my cognitive condition was. By the third repeated question I had to say hello I have now answered that question several times. He was so obsessed with this topic that 2 follow up appointments I was asked that yet again, even once told 3 words to remember which he forgot to ask for by the end of that appointment. While he was focused on something I wasn't having issue with, my visible tremors, difficulty walking, overall weakness, and increased pain were very visible but not mentioned.

Do you ever just want to walk in the appointment you are paying for, want to make them sit down in the chair we get to sit in, then we stand and proceed to force them to pay attention, listen, repeat what we just said? I know I sure do. If we get frustrated, tears become apparent, even snap back a smart ass answer then we are the problem. We are now hysterical, depressed, hormonal, etc. We can't win.

I once had a specialist to tell me that around 27% of people have autoimmune diseases that doctors haven't been able to give a name to, don't fall under set guidelines for others. It seems to me that maybe they actually do. Our society has this crazy need to group things into nice neat boxes. Also have you ever noticed that over 90% of all treatments for several different chronic conditions all fall under the same heading, immunosuppressant? IBS, Crohn's Disease, UC, Psoriasis, MS, RA, etc all have different name of medications but still fall under the same heading. Ever take the time to listen to side effects listed on tv commercials? Identical. So while I have been jumping for now 1.5 years through hoops trying to get just 1 label aka as a diagnosis for me, the same exact type of medication could have been started to help treat me. The medical field doesn't approve of any gray areas. I am a firm believer that it is the gray area they ignore which provide the most information. We could be diagnosed feeling better if recognized. When a Dr asked me if a diagnosis was necessary, my first reply was No but I reminded him without one we don't actually get treated with respect, insurance won't pay for certain treatments, but most of all they stop searching for answers. YES today we have to have a diagnosis because society demands it otherwise we are nothing more than hypochondriacs or listed as frequent flyers.

We need to stop being so specialized, needing to check specific boxes for a name to what we have. We need doctors to LISTEN to what we are saying, SEE our visible symptoms, WILLING to treat while continuing to hunt for answers regardless if they are known for being a GI, Neurologist, Rheumatologist, Immunologist, etc. Not everyone will have exactly the same checked boxes, even respond identically to the same medications. WE NEED THE MEDICAL COMMUNITY TO START THINKING OUTSIDE THE BOX! Until they do this there will be many many more ppl waiting in a very long line of total frustration even possibly giving up.