Little Hope Notes

Disclaimer: Hey there, friend! Just a quick reminder—I’m not a doctor, and this blog post isn’t medical advice (as much as I wish my Google searches made me a certified expert). This blog is all about sharing personal experiences and insights, not diagnosing or curing anything—so take what resonates, do your own research, and always prioritize your health. 💛

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Hi, welcome, pull up a heating pad.

If you live with chronic illness, you already know that medical appointments can feel like a whole second job. Between my endometriosis that pretends it’s a full-time demolition crew, POTS that turns standing up into an Olympic sport, and ADHD that has me forgetting my own list of symptoms mid-sentence… it’s a lot. 😜

I’m sure you get it.

And then you add in the fun of not being believed, being rushed, or being told “Your labs are normal. Have you tried drinking more water?” when your body is clearly out here buffering like a 2007 YouTube video.

That’s why I put together 10 genuinely helpful tips you can use at your next appointment. They’re tips that make you feel empowered, organized, and fully in control (even if your nervous system didn’t get the memo).

These are the strategies I personally use to get better care without needing to morph into “that patient.” I’m looking at you, Karen. (Unless we need to. Because we can. And we will, when necessary).

Let’s get into it.

Make a Micro-List of Your Top 3 Concerns

As someone with ADHD, if I go into an appointment with a mental list, it evaporates the moment the doctor asks, “So what brings you in?”

Suddenly I’m like, I don’t know, bad vibes?

So now, I make a micro-list—just THREE things I absolutely need addressed.

Not 12. Not 6. Three.

Write them in your phone notes so you don’t lose them. When the doc tries to move on before you’re done, you can gently say:

“I still have two more concerns we haven’t covered.”

Polite. Direct. Unignorable.

Bring Documentation (Even If It’s Messy)

You do NOT need a color-coded binder to be taken seriously (though if you have one, I salute you).

Just bring any of these baddies:

• Symptom notes
• Photos or videos of flare-ups
• Dates of fainting/dizziness episodes
• Pain patterns
• Medication reactions

When I bring screenshots of my heart rate spikes from POTS episodes? Suddenly the energy in the room shifts from “Hmm okay” to “Oh! We need to talk.”

Documentation takes the guesswork out of your experience and gives it some evidence doctors can see. It makes dismissal a lot harder.

Lead With the Functional Impact

If you’ve ever been told “your labs look good,” try shifting the convo to HOW your symptoms affect your actual life.

For example:

“I can’t stand for more than 10 minutes without feeling faint.”
“This pain makes it hard to work or sleep.”
“This fatigue is impacting my ability to drive safely.”

Doctors often respond more to functionality than symptom descriptions.

If your body is stopping you from living your life, that’s not mild. That’s serious.

Use the Broken Record Technique

If you have endo or POTS (or both!), you’ve probably been medically interrupted more than your ADHD brain interrupts your own thoughts.

When a doctor tries to wave off your concern, repeat your point calmly:

“I hear you, but my concern is still…”
“I understand, but the issue impacting my daily life is…”
“That may be true, but the symptom I need addressed today is…”

Not aggressive.
Not rude.
Just persistent.

Ask “What’s the Plan?” Instead of “Is This Normal?”

Asking if something is “normal” gives doctors an out.

If you’ve had doctors look at you and say, “It’s not probable, but not impossible.” Then, send you on your way with zero answers and a new Rx, then you get it.

Asking for a plan gives them a responsibility.

Try:

“What’s the plan if these symptoms keep happening?”
“What tests do we need to rule things out?”
“What’s the next step?”

A plan turns your appointment into a collaboration—not a guessing game.

Bring a Support Person or Put Someone on Speakerphone

Listen… POTS brain fog + ADHD + a fast-talking doctor = me leaving the appointment like:

“Did they say I’m fine or dying? Couldn’t tell you.”

So bring backup.
A partner, friend, or parent.
Or literally put someone on speakerphone and say:

“I like to have someone else listen in so I don’t miss anything.”

Doctors are magically more thorough when they know they’re being witnessed.
(It’s fascinating, truly.) I can’t tell you how many times that bringing my husband to my appointment with me made my specialist sit up straight and pay attention. Sexism, anyone? More on that another time…🙄

Ask for Specific Notes to Be Added to Your Chart

If a doctor won’t take your symptom seriously or refuses testing, say:

“Could you add that to my chart for me so I have it for my records?”

Nothing—and I mean nothing—makes a doctor pay more attention than knowing their dismissal will be on paper.

Suddenly they’re like, “Well, maybe we could order that test…”

Chart notes are your receipts. Use them.

Practice Your Opening Statement (Yes, Really)

The first 60 seconds set the tone.
So give your doctor a clear, tight opener:

“I have noticed my pain has gotten so much worse than my last appointment. Today I need help with ____ because it’s impacting my ability to ____.”

It’s respectful, efficient, and helps you avoid derailing into 47 side tangents (which my ADHD loves to do).

Plus, it signals: I am organized. I am prepared. And I am not here to be dismissed. 💅🏽

Request Copies of Everything

Bloodwork. Imaging. Notes. Treatment plans.

Ask for ALL of it.

You don’t need a reason. It’s literally your legal right.

Not only does it help when you see other specialists, but it also creates a sense of control and continuity—something chronic illness rarely gives us. Even better if you have an online patient portal with the practice.

If Something Feels Off, You Can Leave

Not dramatic. Not rude. Just empowered.

If a doctor is rushing you, dismissing you, talking over you, or making you feel small, you can absolutely say:

“I don’t feel we’re on the same page today. I’m going to clarify this for you.”

You’re not trapped.
You don’t owe them emotional labor.
Your time matters.

And yes, you can switch doctors. That’s not being “difficult”. It’s being a person who deserves adequate care.

Final Thoughts: You’re Not Asking for Too Much

If you live with endo, POTS, ADHD, or any chronic condition, you already know your body asks a LOT of you. You don’t also need a medical system that treats you like you’re asking for too much.

These tips aren’t about being the “perfect patient.” It’s about being empowered, prepared, and protected.

So show up as you are—messy notes, appointment side-kick bestie, distracted brain and all—and know this:

Your symptoms are real.
Your experience is valid.
And you absolutely deserve care that takes you seriously.