Seriously, is there anything more scary and frustrating?
Honestly, I used to be responsible for that part of our life. And I used to handle that responsibility by skipping it.
Endocrinologist for our diabetes? Sorry, busy. That shit is crazy complicated.
Gynocologist? Yeah, NO. Just not happening. Not even sorry.
Pediatrist? Nope. Not going to sit alone in a room with a strange man touching my feet.
ENT? That one I did. Until it hurt way too much to keep doing with no support.
Primary care? Nah. I liked her and trusted her but she nagged too much about the ones I wouldn’t go see.
I tried. I tried often actually.
Making appointments got confusing. Double booked a lot. We couldn’t seem to keep them straight, no matter how many planners and calendars we tried. Child care was impossible to find, couldn’t navigate between school drop offs and pick ups.
Attending and participating in the appointments was tough too. We’re reasonably smart girls. We got through college with a 3.9 GPA. We catch on quick. The information was never the problem. The problem was retaining and applying constantly changing information, like insulin doses based on sliding scales.
Lab work… finding someone willing to go through the anxiety of strangers at the lab touching us coupled with the fact that we don’t do pain well and always inevitably ended up with the lab tech that can’t find a vein was impossible at times. And that’s assuming we could work the lab around school pick up and drop offs and headstart times.
Gynecology appointments… you tricked me into it once. I ended up with an abnormal pap smear result and nearly 2 years of worry. And I was alone. That test wasn’t worth the months of flashbacks, stress, and re-tests.
Our diagnoses could be found in the charts. And it lead to a couple of different outcomes. Ones we don’t talk much about anymore. It was either ignored, we were treated like idiots, or we were told to focus more because adults do this stuff just fine and the body is 30 something. Totally invalidating and completely annoying.
I can personally, tell you every single step it takes to put tubes in and pull them out of our ears. I can tell you exactly how the body will react, what it will feel like, how long the pain will linger, and what the emotional fallout will be. This doesn’t mean I know more than doctors do. It means I understand how this body works.
I can not tell you what to expect during and after a pap smear. Its a huge source of stress and anxiety. Pap smears feel too much like rape and they hurt badly. That’s reality, not dramatics.
Medical appointments and pain trigger massive avalanche effects within the system. It’s nasty. Yesterday we had our tube fixed in our right ear. Necessary. Really necessary. Last night and today we’re flashing back to normal pain flashbacks and full of emotion. Only today’s emotion seems to be more overwhelming appreciation for Mama because she doesn’t let any of us go through any of this alone anymore.
She’s always in the room, a barrier keeping us safe and centered. Someone to talk to the doctor and hear the doctor while we’re trying to filter out the hard stuff inside. Someone to tell the doctors the truth when our instinct is to lie to protect ourselves, or whoever we’re protecting.
Maybe it stems from the fact that when the body was a child we weren’t allowed to tell doctors much of anything. We weren’t allowed to talk about pain. Expressing discomfort was complaining. Letting a doctor look for things risked the guardians being caught in their wrong doing. We had pain but was so often told that we were stupid and didn’t know what we were talking about that it became impossible for us to recognize if we were actually feeling pain or not.
Just writing this post was confusing and exhausting. Trying to explain it all to a medical professional is even worse for us, in general. Some of the people in our DID support group express similar challenges with medical appointments and medical issues in general. It would be fantastic if medical professionals, support people, and family could understand, or at least try to understand.