Why diagnosis is important to chronically ill patients

Validation

A diagnosis validates your symptoms, confirms these are not made up and you’re not faking it.

Except for psychiatric disorders, the symptoms are not all in your head.

My symptoms mimicked a lot of psychological disorders, but proper medical testing confirms they’re physiological.

My heart rate and blood pressure increases after a minute of standing, and blood pools into my extremities with slow capillary refill.

The longer I’m upright, the higher my fight/flight response and presyncope symptoms.

On the outside, it looked like I “just” didn’t “want” to do things, complained about walking and had panic attacks.

Diagnoses validate my symptoms because they mean my symptoms were taken seriously instead of dismissed.

Helps heal invalidation trauma

I have struggled to be upright for as long as I can remember, but it was perceived and dismissed as laziness. My parents and guardians reprimanded me for sitting so much and not being active, saying I would end up obese and die young because of it.

When sent outside to play, I’d walk around for a bit before “taking a short nap” in the grass. I grew up calling my fainting spells “short naps” because that was the vocabulary I had.

While I understand adults in my youth had only their own vocabulary to work with, I keep wondering what could’ve happened if they’d listened to ME and taken me to the doctor. My childhood caregivers heard me, but they filtered everything I said through their own perspective of what was happening and make a conclusion from that alone.

The effects of my abusive, neglectful childhood keep compounding and showing up through physiological reports. My lack of consistent medical records from childhood into adulthood also demonstrate that.

Access to specialized care

My chart records whether I was sitting when my BP and pulse are taken.

My physical therapist adjusted my treatment to where I am sitting or laying for most of it and lets me pause when dizzy and lightheaded.

The physical therapist my old spine specialist referred me to did not seem okay to do that, saying, “Yeah…we’re going to be doing a lot of things that will get your heart pumping.” I did not feel safe going.

My cardiologist told me to increase my sodium intake and not drink any plain water.

When I’m low on electrolytes, especially in relation to sodium, I am a nervous wreck. With proper sodium intake, most of my psychological symptoms disappear.

My care team knows I’m autistic, recovering from atypical anorexia, and have history of medical trauma. I’m lucky to have a care team I feel safe sharing this with, so I know it’s rare.

Having diagnoses in my chart helps me receive more specialized care. I didn’t realize how much I needed specialized care until I was hospitalized for escalating symptoms related to orthostatic intolerance and lower back pain.

Much-needed answers

All my symptoms of chronic illnesses have been dismissed as “anxiety” at some point.

So…I did not receive the care I needed.

As a kid, my stepfather yelled at me to put my hands above my head during asthma attacks, which actually made me struggle to breathe more — to where I wouldn’t be able to cough. I felt like I was suffocating.

While overhauling my blog posts, I found several references to orthostatic intolerance, salty foods and electrolytes — as my quirks.

In 2022, my primary care physician (PCP) told me to “just exercise less” and “try not to be too active” because my heart would pound so hard while going up/down stairs for my apartment, and trying to go about my life — both work and shopping.

It’s 2026, and my new PCP has me feeling like maybe I don’t have to go at dealing with my health all alone.

Keeping a PCP informed of your symptoms is important

A PCP can add to your chart information over time that may be relevant for future diagnoses related to ongoing patterns.

You basically get to offload your symptoms onto them, they put it in your chart, and you’re no longer carrying that weight around all by yourself.

It’s a huge relief.

Seeking diagnosis for odd/worsening symptoms is normal!

I’m being retested for allergies because it’s been 13 years! and I have weird allergy flare-ups, so I want to know if my allergies have changed vs. which allergies are weird.

People who seek diagnosis for their symptom clusters are seeking answers to increase their quality of life — not playing diagnostic Pokémon.

Sometimes, those answers result in multiple diagnoses because a lot is going on.

Diagnosis opens doors to specialized care, treatment, better coping mechanisms, assistive devices, and even school/workplace accommodations.

Going to the doctor for symptom clusters, especially when you suspect you have a specific diagnosis, is normal.

I’m saying this as someone who was not taken to the doctor often growing up, with little consistency with doctors. Self-medicating is the norm in my family, as is armchair psychiatry.

I’m a first-generation cycle-breaker…also, my typical coping methods landed me in the hospital 3x across two months, and then I could not “just push through” anything anymore.

Like, missed-3-months-of-work type of unable to push through.

I had no idea how much my quality of life could improve, even from a teeny bit of validation in the form of “yeah, you need more electrolytes/sodium”.