Frustrating Lessons for Navigating the Healthcare System

You and me both Stitch 🙂

This will always leave me momentarily speechless, but there actually are a lot of people who believe that the healthcare system in the United States lives up to its optimal potential. Let’s just say that those people and I aren’t on the same page.   Crap, we’re not even reading the same book.  We may be in a completely different language, for goodness sake.

I’ve decided that people who love our healthcare system have never been sick or been close to someone who is sick.  I’d bet quite a hefty amount of money that any illness they’ve ever had (probably a sinus infection or a flu) has either been temporary or it hasn’t been life altering.  The one week they spend being sick won’t determine who they are or what they do with their life.  It won’t change the way they see the world or how they treat others.  Whether they got that sinus infection or not, they’d still be the same person on the same path traveling to the same destination.

When my patience wears thin (which is pretty much every time I roll into Mayo Clinic), these people really grind my gears, partly because I envy them for being so healthy and partly because they’ve got no clue how it all works behind that pretty little curtain.  They don’t see the power plays, the politics, the need to constantly cover their own asses, or the complete disregard for a person’s time, money and sanity.  They see a system that, when they do get a sinus infection or strep throat, they go to their neighborhood doctor who prescribes an antibiotic.  They’re back to normal within a few days.  See how simple that is?  No wonder they feel like the healthcare system works efficiently; every problem that they’ve ever sought treatment for has been fixed within a few days and the simple popping of a pill.

Don’t get me wrong: as compared to healthcare in other regions of the world, we are on cloud 9, and I am grateful that I have had the opportunities to get treatments that wouldn’t be available to me elsewhere.  There are a lot of amazing people that work in the healthcare system, and the efforts of those people save many, many lives.  There is a handful of healthcare professionals that will stick with me for the rest of my life.  These people did everything they possibly could to help me, and we developed a relationship based on the common desire to make me feel better.  They treated me with the utmost respect and empathy, and that will always stick with me.

Unfortunately, though, in my experience they are the exception, not the rule.  After years of dealing with doctors and insurance companies and other healthcare professionals, I could write a book with true stories that are so far-fetched that you can’t do anything else but laugh.  From all of these experiences, I’ve figured out a thing or two about how to survive within the system and how to get what I need out of it.  I wish we had known these things when we first started this venture because life would have been a whole hell of a lot simpler for us.  I’m hoping that by telling you everything I’ve learned over the years that your experiences will be far less painful and frustrating should you or someone you love, God forbid, ever get sick.  Enjoy!

  1. YOU are your own best advocate.  You are the one experiencing the pain, and you are the one that has to deal with the consequences if things don’t go according to plan.  Recognize that no one can describe the way that you are feeling as well as you can.  You need to be the one that wants treatment like you want to breathe because if its not important enough for you to fight for it, then it certainly won’t translate as important to your doctor.
  2. Be honest.  My first instinct has always been to put on that happy face, and that has gotten me into a lot of trouble with my doctors.  I downplay the severity of pain, and I don’t let them see me break.  Now, how the hell are they supposed to help me if I don’t let them see what is really going on?  Just like you and I, your doctor isn’t a mind-reader.  Let them see you break so that they can figure out how to put you back together again.  If you’re not willing to be honest and forthcoming, you’re just wasting your time seeing a doctor.
  3. Be thorough!  There is no such thing as a stupid question in these kinds of situations. If you feel like 2+2=5, you need to ask more questions.  Double check that you and the professionals are talking about the same thing and going to the same place.  Your doctor may think you’re an idiot, but if the two of you are on the same page, it will save the both of you precious time, patience and money.
  4. Follow your gut.  Let’s just say that sometimes things just don’t sound right.  Sometimes, for example, scheduling makes errors, and appointments are ruined because of that.  A couple of weeks ago I had to get an MRI of my spine done, and I needed to get a preop evaluation done prior to the MRI.  They were scheduled for separate days, and I had this feeling that that was going to be a problem.  As it turns out, you can’t do the preop evaluation on a separate day, and I had missed school and driven 3 hours just to have someone tell me to go home.  I knew that it didn’t make sense to do it this way, yet I didn’t press the issue.  Had I listened to my intuition, I would have saved myself a lot of trouble.  When you have a gut feeling, when your stomach starts to do that flippidy-floppidy thing, there is always a reason.  Listen to your body and your gut; its smarter than you think it is.
  5. Realize that most people that work in this system are overworked, underpaid, and underappreciated.  In the story that I told you in Tip #4, I actually got to meet the woman who made the scheduling mistake.  She looked exhausted and completely overworked.  She felt terrible about the mistake and gave me a sincere apology (something I rarely get).  It reminded me that none of these people make the mistakes they do with vengeance in their hearts.  They make the mistake because there are a million other things they have to get done in a short period of time.  Try to give them the benefit of the doubt if you can, as hard as that may sound.
  6. Develop patience.  You are going to have to jump through a lot of stupid hoops, because there are a lot of stupid protocols that have to be followed.  Just buckle down, grit your teeth, and get through it.  There’s rarely a way around these things, and if you just accept it now that this will be a 2-steps forward, 1-step back kind of situation, you’ll be a much happier camper.
  7. You will get a whole lot further with honey than with vinegar.  If there is one lesson you take away from this post, please let it be this one.  Regardless of how you feel about the person you’re dealing with, suck it up and channel Miss Congeniality.  You want these people to be on your side, because you want them to want to pull strings for you.  The only way to get them on your side is to be kind, understanding and patient.  Believe me, taking the time to treat them like people will pay off right when you really need it

Food for thought: This is a frustrating process; there’s no denying that.  There are hoops to jump through and politics at play.  You are not in control of those things, but you are in control of the way in which you react.  Try not to forget that these are people just like you, and you should treat them with the respect and empathy with which you wish to be treated (although I would suggest that you find some ice cream or something you can break after every appointment J).  Strive to find a balance between giving people the benefit of the doubt and holding them accountable for their mistakes.  As someone who is just now learning something of the lessons above, your life will be so much easier if you figure these things out from the beginning. 

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