To my fellow chronically ill people.

TW: medical neglect

I'm going to let you in on how the medical system works.

When you go to your PCP, they're there to treat normal stuff - colds and flu, high blood pressure, etc. They can be your first gatekeeper when it comes to determining if your condition is "normal" enough to see a specialist or not. Otherwise, they refer you to a specialist.

Now, here's the thing. Your body is intimately connected. And you may not be seeing the right specialist based on the symptoms your body is giving you to work with. I'll use my most recent personal example to illustrate:

My first symptom that something was "wrong" was that I was having urinary problems. I'd empty my bladder but my brain wouldn't turn the "gotta go" signal off, so I'd feel like I'm going to pee my pants with a freshly emptied bladder, and that feeling would persist for a good hour. Or I'd genuinely need to empty my bladder every 20 minutes for a two hour stretch, usually at 2am. Or, I wouldn't realize my bladder was full until I'd cough or laugh and have to change my pants. Or, I'd have to strain to empty my bladder. A nine month wait for a urology appointment, and a full Urodynamics workup showed a bladder in pristine health. They sent me to a pelvic floor therapist, who's tests revealed I had a perfect pelvic floor, and something wrong going into the left bend of my colon.

At the same time, I'm dealing with chronic constipation so bad that Epsom salt and vegetable glycerine enemas were my only option for voiding my bowels all summer. A six month wait to see a gastroenterologist landed me with a nurse practitioner who dgaf about what my pelvic floor therapist found. I got no real treatment.

It wasn't until I couldn't walk that I got the referral to orthopedics, and discovered that my pelvis was tilted thanks to the rotten hip joint. The bladder issues resolved immediately after surgery. The bowel issues are starting to heal.

Here's the takeaway: all of those doctors treated me to the fullest their specialty allows... with the exception of the gastroenterology NP, she was pretty useless. But they were not going to look outside the bounds of their specialty for answers. The urologist was not going to x-ray my pelvis, he was going to cath my bladder and put it through the paces.

I saw a young patient complaining online recently that they can't find a neurologist who will take the nerve pain in their arm seriously. Of course - a neurologist isn't going to care unless it's a migraine or MS. You need to go to either orthopedics or spine & pain for that. But a neurologist won't tell you that. A neurologist will simply tell you that there's nothing wrong... but they mean that there's nothing wrong that they can treat within their specialty.

I think House, MD really messed with a lot of people's ideas of how medicine really works. And diminished the role of the patient as advocate. When you have a chronic illness, you need to stay on top of your doctors, and make sure you're seeing the right one with the right tools. It's not the other way around.