I came across a show the other day called “Chasing the Cure”. Have you seen it? Basically, there are a whole bunch of people with undiagnosed diseases that are running roughshod over their lives. They are, literally, tore up from the floor up – no joke.
If you want to play doctor – and maybe help solve some of these medical mysteries – give this show a try. The real-life drama is AMAZING. Seriously, I want to get on.
No, SERIOUSLY, I really want to, especially after watching the first episode. I was SCREAMING at the TV like my team was on the one-yard line in the SuperBowl.
“WHAT DO YOU MEAN SHE HASN’T SEEN A GYNECOLOGIST!!!”
OK, let me give you some backstory here because I am sure you are lost in the weeds of my rant!
A young, athletic girl suddenly, seemingly overnight develops the following symptoms:
- Hair loss from the head
- Hair gain on the face
- Bowel Issues (BMs 10-12 times a day!)
- Weight Gain of almost 100 lbs
- Metabolic Syndrome
All the experts hem and haw over what it might be until someone asks where the gynecologist’s exam report is and discovers, there is none!
I almost threw my TV.
Instead, I shouted like a maniac – “SHE HAS PCOS, DUMMY!”
But a Family Practice doctor had ruled that out already…which was wrong because…
SHE ACTUALLY HAS PCOS at the end of the episode. I was not shocked, or calm for that matter…..I was FREAKING MAD!!!
Why? Because I began to see a pattern emerging. Patients missing key elements needed to diagnose health issues. This poor young woman suffered for THREE YEARS because she didn’t see a gynecologist. Another guy needed a Dermatologist, Hematologist, one needed a dang EYE DOCTOR! An EYE DOCTOR!
You have to be your own health advocate. That’s the crux of the issue. Yes, it’s sad that our healthcare system can not seem to connect the dots between different specialties to move a patient successfully from one to another, and then coordinate findings, to make a diagnosis. It’s a failing of our health system overall – and probably across the globe as well. Patients seem to exist in a vacuum. So you, as the patient, have to plug in the cord to get the healthcare vacuum to suck (or, actually, suck less). You’ll want to become a GREAT advocate for your own health – even if you don’t have some mystery disease – by doing the following:
- Take notes at each appointment or have someone with you to take notes. It is hard to remember those words you’ll want to communicate to your entire care team and you’ll want to research anything you’ve received a diagnosis of.
- Write down questions so you remember to ask during an appointment.
- Keep track of tests, dates, and results in a notebook so they can be communicated to your care team.
- Oh yeah, get a care team! If you are not feeling well and your Primary Care Doctor doesn’t have the answers you need specialists. Depending on your insurance, you can go directly to a specialist or request a referral. Research what kind of specialist you might need. There may be multiple options. For example, radiating arm pain might need an Osteopath, a Rheumatologist, a Neurologist or even a Cardiologist. Ask your primary care doctor which specialty is most likely to be able to diagnose your condition and get the referral!
- Don’t stop trying. Even if you are at the right specialist, remember they are human. They may overlook something or maybe have never seen something that another doctor with the same specialty has.
- Don’t leave out even small details – you never know what little factoid will trigger a potential diagnosis. Doctors can weed through what’s important or not – but they need the deets, ladies!
Whatever you do, don’t resign yourself to feeling bad and don’t become a victim to the “it’s in your head” diagnosis. Even that should warrant a trip to a specialist! Women take longer than men to receive a diagnosis for many reasons. The one reason we can control is the ability to advocate for our health as well and as loudly as men do. When you KNOW something is wrong, say it. When you feel ignored, find another doctor. When you can’t get an answer, get a second opinion. Do whatever it takes to be the Erin Brockovich of your health – it’s irreplaceable!