The thing I want people to know is how much time a chronic illness takes from us. I don't just mean the time we spend in bed, either. It's a thousand tiny cuts that consume days and weeks. A 🧵for anyone who wants to learn - ThreadSky

drrachel.bsky.social • 478 days ago

The thing I want people to know is how much time a chronic illness takes from us.

I don't just mean the time we spend in bed, either. It's a thousand tiny cuts that consume days and weeks.

A 🧵for anyone who wants to learn

Comments

drrachel.bsky.social•478 days ago

I'm thankful that I have a flexible job, understanding family, and tons of economic, educational, and racial privilege to help make it suck less. Still, this country has a long way to go to improve the lives with chronic illness. Thanks for letting me rant. ☺️

drrachel.bsky.social•478 days ago

8. Maintaining at home care. I have to watch my food, exercise, physical therapy, mental health tasks, non-prescription items (e.g. pain reliever, the right bath soak), and ensure my environment doesn't make things worse. These mostly happen daily and require a running to do list.

drrachel.bsky.social•478 days ago

7. Staying up to date. Science updates but doctors don't always so I have Google Scholar alerts for publications, read books every year, check medical association recommendations... As I'm not a medical doctor this takes longer than I'd like.

drrachel.bsky.social•478 days ago

6. Finding extra care. Based on 5, gaslighting takes a toll on mental health and needing therapy for this. And social groups of people who get it. And educating friends and loved ones on how they can support you (hard when you don't even know yourself).

drrachel.bsky.social•478 days ago

5. Finding care. It took almost 30 years to get diagnosed with Endo and I estimate a dozen doctors telling me it was normal before I found one who listened. Now imagine this for multiple conditions.

drrachel.bsky.social•478 days ago

4. Getting medications and refills. Depending on drug and pharmacy and insurance and prescription, these don't auto-refill. Tracking and calling and setting up my pillbox for the month takes time and so much mental energy.

drrachel.bsky.social•478 days ago

3. Synthesizing info. None of my doctors talk or share notes so they work in silos. I have to look up whether comorbidities are common or caused by medications / prescribed activities. If I can't figure it out, I have to lay this history at every. single. appointment (getting charged more ofc).

drrachel.bsky.social•478 days ago

2. Dealing with insurance. Don't think I need to explain this but appeals take hours and days and then months to resolve (best case scenario).

cnsyoung.com•478 days ago

Just went through this. Medication denied again. Just exhausting!

drrachel.bsky.social•478 days ago

UGH I am sorry. I'm on a new one that might not work because the one that does isn't covered despite all the things. It shouldn't be like this. We don't have energy for this!!

cnsyoung.com•478 days ago

Right. And also this:

Doc: you should do x
Me: okay how should I do that
Doc: see this specialist
Me: ok
Insurance: oh that's not covered
Specialist: yeah so that's gonna be like $300 an appointment and we expect you to come weekly

drrachel.bsky.social•478 days ago

YES!! I had to wait until I met my out of pocket max to get seen for two things ☠️😭😞

Me / doctor: need to do this
Insurance: "nah, good try tho"

drrachel.bsky.social•478 days ago

1. Seeing specialists. Specialists aren't in every city & they have months and months before you can see them meaning we spend hours on the road and often call multiple times to see if there's been a cancellation. These factors mean you can't book two appointments out of town for the same day.

Comments

Posting Rules

Reply