My Misdiagnosis Story and Tips to Prevent Your Own
"The art of medicine is trying to figure out which of these symptoms -- which 99 times out of 100 is something innocent, one time out of 100 turns out to be something serious." -Doctor Jon LaPook
The cutest chubby lil soccer player you've ever seen right?
I have always been overweight/obese. Always. Even as a young child running up and down the soccer field, I was big. I was always the biggest child on the field. In the sixth grade, I overheard two of my male classmates talking about me. They called me a fat, ugly bitch. Guess which word hurt the most? Fat. I went home and cried about it to my mom and she enrolled us in Weight Watchers. I lost 25 pounds that summer and had an amazing growth spurt (I went from about 4'10" to 5'1", I was tall y'all!) and for the first time in my life, the doctor said I was in range on that awful height/weight chart! But my "normal" weight lasted EXACTLY one year and then I was back to being overweight.
Throughout all of those years, I remember doctors wondering if I had a hormonal problem. I believe that I even had my thyroid tested once or twice, to no avail. Everything came back normal and my doctors just kept telling my mom to watch what I was eating and to keep me active. I guess they never paid much attention to the fact that I did play soccer up until 9th grade, but no matter.
Toward the end of my Freshman year of college, I went to the health center because of a ingrown toenail that was bothering me and casually said to the nurse: "I haven't had a period in 4 months, is that normal?" She asked me three times if there was any chance that I was pregnant. After the third time, I told her that if I was pregnant, we all better prepare because that means Jesus is making his return. She still didn't believe me; apparently college kids lie. Anyway, after several doctor's visits, a ton of medical tests and a sickening number of needle sticks for blood draws, I had a diagnosis: Polycystic Ovarian Syndrome (PCOS). When I tell you the wave of relief that came with that diagnosis! It wasn't just me! I wasn't a complete and total failure! There was something wrong with me and now it had a name. My doctors had been right in thinking something was wrong with my hormones, they just had the wrong thing and were checking the wrong hormones. I had been having symptoms for years, aside from the continual weight gain and difficulty losing it, I had been having missed periods since starting my cycle. I had not communicated all of that information to my doctors though. I also didn't share that I had terrible mood swings. I didn't know that all of these things could be related.
Misdiagnoses happen way more often than they should. There are reports that estimate that 12 million people in the US receive a misdiagnosis every year. That means that 1 out of every 20 people could receive a misdiagnosis this year. Scary right? There are many things that can lead to a misdiagnosis. A particular disease may have similar symptoms to another disease. The disease or condition may be rare and therefore the doctor may not be familiar with the signs and symptoms. The patient may not have provided accurate family history or accounts of the signs and symptoms. The doctor may not have properly read the results of a test.
We are all human, doctors and patients alike, so it is up to all of us to reduce misdiagnoses. Here are some things that you can do as a patient to keep this from happening to you:
Be honest and upfront with your doctor- Tell you doctor the number of sexual partners you've had, mention that weird looking bump on your private areas, ask about the weird color or smell of your poop. Seriously, your doctor can't treat it if he or she doesn't know about it. They've see plenty of weird stuff, don't be shy.
Keep track of you family history- This can be difficult for some of us, particularly if you are adopted or from a single parent home. Do your best. Ask your family about their health. Let your doctor know about the gaps in your family history.
Monitor your signs and symptoms- Keep a journal, it can be in your phone, of how often you are experiencing symptoms and what they are. This will help you give your doctor accurate information.
Prepare for your appointment- This ties into the last point. Remember I said I sprung the question about my period on the nurse, while she was looking at my toe? That was bad. She was focused on one thing and had to completely change her train of thought. Had I been prepared, I would have made a specific appointment to address my concerns and it would have went like this: "Ma'am, I stopped having a period about 4 months ago, and I know I am definitely not pregnant. I also have noticed that I have been having mood swings. And I gained so much weight this year, even though I have the smallest meal plan, which I barely use and I do a lot of walking around on campus. I know the freshman 15 is expected, but this is way more than that. Do you think I should be concerned?" See how much better preparation is? Be prepared.
Follow up- If you don't get a test result back from the doctor, don't assume all is well. Call the office and confirm the results and ask what the next steps are. You may need to be retested at a later date.
Ask for second opinions- There is nothing wrong with checking with more than one doctor. Again, doctors are human, and therefore capable of making mistakes. It is completely acceptable and often encouraged to get more than one opinion.
Educate yourself- I'm not saying check out WebMD. That would be irresponsible of me. DON'T DO IT! Instead, check with a trusted colleague or medical professional that you know and get his or her input. That person may not have enough knowledge about the specific problem you are facing to offer medical help, but I bet that person can help you prepare for your appointment.
Trust your gut- The final point is the most important point. You know your body better than anyone. If it feels wrong, then it probably is wrong. Trust your judgement.
Fortunately for me, my misdiagnosis was not life threatening. PCOS, can lead to some severe consequences, but can be controlled. I am thankful to have a diagnosis to work with and look forward to the day when more money is put into researching this common disorder to help women like me. Many people are not so fortunate to have a happy ending to their misdiagnosis. I truly hope that you never have to go through this situation. With these tips you will be even less likely to have to deal with it. So go forth, prepare for you next doctor's visit and rock it. Share these tips with your loved ones, you may help save a life.
Jennifer Brea did a beautiful Ted Talk on dealing with her misdiagnosis and what needs to change to prevent this from happening in the future. Check it out here.
How do you prepare for a doctor's appointment? Have you or a loved one ever had to deal with a misdiagnosis? Leave a comment below. Subscribe and share.
Improving our health literacy so that we all may live healthier, more abundant lives.