Lessons Learned: Part 1

Whew! I haven't had much internet access lately! But, that doesn't mean I haven't been thinking about what I would write if I could. So, here goes....

In my fairly brief experience, I've learned several lessons about the health care system that I hope will help other people. I certainly haven't learned it all, which is why this is only Part 1!

Advocate for Yourself: Don't be a jerk but make your needs to known. This includes your doctor, your nurse, your phlebotomist, the person at the check-in counter at your local hospital, whoever! The medical system can be very intimidating but it's really made up of individuals like you and me who are trying their best with what they have and what they know. There have been multiple occasions when I needed a quick turn-around on an MRI and, even though, 'technically,' only emergency appointments were available, the scheduler gave me one anyway just because I explained more thoroughly why I needed it (e.g., my doctor was going out of town and needed the results soon, I was really scared about the possible outcomes). It pays to be open and talk with people honestly. And, if the first person doesn't listen, try to find someone who will. No need to be mean or overly pushy but this is your health and no one will look out for it like you will.



Sometimes No Doesn't Always Mean No: My first lumbar puncture came back negative for MS so, I assumed that meant I definitely didn't have MS. Wrong!!! Medicine is just like every other field - there are margins of error. And sometimes, there are significant margins of error! Here's an example for you: in a 2004 study, researchers found that approximately 45 out of 100 women who were found to have HPV actually tested negative for HPV on a PAP smear. That's a lot of women who thought they were free and clear of a pretty significant disease! Another example: the cell patterns found in lumbar punctures that are commonly associated with MS are also associated with some cancers and there's no way to differentiate cancer from MS with this test alone.


Amazingly enough, many medical tests have very, very high rates of false negative results. So, a negative test result doesn't always mean 'negative.' More likely than not, a negative test result means, 'We're pretty sure that you don't have it but we can't be totally sure."

This is the kind of thing that could really make you neurotic, right?! Ack - if a test doesn't necessarily mean what the results say, then why are we doing them?! Why believe them?! Why not just sit at home, take a multivitamin, and hope for the best?! I know - I've been there. My goal in mentioning this is not to make you question every little thing you've ever been told when you went into a doctor's office. Instead, my goal is to bring the tests, procedures, and medical opinions into a realistic perspective. Nothing's perfect, especially medicine, so take a diagnosis for what it is - a starting point. Do your homework, talk a lot with your doctors, and if you think something's still wrong even though the tests say differently, advocate for yourself and look for more answers elsewhere.

Keep Records: There is an incredible amount of information that comes with medicine - the bills, the test results, the interpretations, etc. Some health care organizations are getting better at maintaining online records but, often, those don't include doctor's interpretations of tests results or readings of many scans. One thing I wish I had done earlier is to keep a journal. It doesn't have to be anything fancy - just a small notebook where you can keep notes about the date of an appointment, the person you met with, general information they gave you, next steps, etc. Not only will having this information help you later but the process of writing it down while you're with the doctor/nurse helps ensure that you understand what they said and know what you need to do.

Forget Susie Sunshine: This isn't specifically about the health care system but it's important anyway.

My mom has given me a huge gift of freedom throughout my life and especially during the past several months. Besides sharing in (and expanding on) my happiness, she has let me know that I'm allowed to feel bad, allowed to feel scared, allowed to feel really pissed off. I've never had to be Susie Sunshine or Pollyanna. I've never had to pretend I was happier than I was. Don't get me wrong - she's not encouraging me to be depressed - but the stress of having to put on a brave face can often be worse than feeling bad in the first place.

Dealing with medical issues - regardless of how major or minor - is very stressful. Patients, families, and friends can go through an incredible roller coaster of emotions. Some of my more poignant emotions have included: helplessness, fear, urgency, anger, anxiety, frustration, surprise, denial, sadness, happiness, relief, loss, and solidarity. These emotions can come and go for a few seconds or can drag on for hours. In all honesty, I can say that I feel really good about 95% of the time. I'm genuinely happy, optimistic, and hopeful for the vast majority of the time. However, for the other 5% of the time, things aren't so pretty. And, you know what? That's ok. Life isn't always cakes and candy. Denying my negative emotions is no healthier than denying my positive ones. Of course, I don't want these emotions to over-run my life but, often, allowing myself to feel bad actually helps me move on so that I can start to feel good again.