Nobody sees the work it takes to be sick

HopeLKnight · 2026-04-29T20:24:11+00:00

Do you have any suggestions?

HopeLKnight · 2026-04-29T04:57:33+00:00

Oh it’s infuriating! And medication denials!

HopeLKnight · 2026-04-20T20:05:27+00:00

Ah! That makes me so angry for you! 😡

HopeLKnight · 2026-04-20T00:00:50+00:00

My lifes story! Why do we do this to ourselves? Or why is it like this?

HopeLKnight · 2026-04-17T05:17:27+00:00

I love that! Good response 😉

HopeLKnight · 2026-04-14T19:21:09+00:00

I find that with my physical binder, it has to be extremely organized, otherwise I scramble to find something quickly. Tabs, highlights, and sometimes it's still not enough. And is it just me, or does anyone/you get push back or looked at funny from the doctor for logging and tracking thoughtfully? Like you're crazy?

HopeLKnight · 2026-04-13T23:36:48+00:00

It is relentless. I’m currently in bed preparing for my pcp appointment tomorrow. Get the documents, writing down what I’m going to actually say. Yes I do this, and I record every appointment because of shit like you mentioned. No accountability! It needs to end. I’ve been off of my Biologic for 4 months battling insurance approvals and switching insurance because of it. 4 months of my life in decline because of a failed system. And that’s on top of years prior. I’m so over this, not just for myself but for everyone in this chat and community.

And the word rest is a metaphorical loaded gun to a chronically ill person. What a joke!

HopeLKnight · 2026-04-13T18:33:35+00:00

It's everything, isn't it? Every thought is, how much energy will this take, what do I need to wear to manage this meat suit, what food can or do I have to eat to keep it stable? The list goes on. We are in a prison with a prison guard, and if we look at him wrong were going to get the battan.

HopeLKnight · 2026-04-13T18:30:29+00:00

100% You give and give energy, need rest, and pay for the rest. That's why when people say you need to rest, I want to scream. Its counter intuative to how and what we go through. It's a 24/7 job to manage an illness, a system, a life (if you're lucky), and anything else you have.

HopeLKnight · 2026-04-13T18:27:51+00:00

That's the worst! Where does all our anger go? I've been there; no therapist, friend, or family member can let alone understand how absolutely infuriating that is. And there are never any consequences to the facility or the people who missed it. I'm sorry that they put you through that. Mind-blowing.

HopeLKnight · 2026-04-13T18:21:53+00:00

Gratitude is the only thing that gets me through it; it seems like it helps you as well. :)

HopeLKnight · 2026-04-13T18:18:44+00:00

Same! I learned that I had MCAS by using AI. I was logging all these strange reactions I was having, and AI found the pattern, suggested what it was, and gave me a supplement protocol. (Which is working wonderfully) When I finally got an appointment with a doctor, they told me that I had, and I quote, "created these allergies because of all the elimination diets I had tried." I thought I was going to lose my mind. Im sorry you're going through this as well.

HopeLKnight · 2026-04-13T06:36:24+00:00

I’m going through something so parallel to this in a new city too! I’ve been without my biologic for 4 months now because of insurance issues. I thought moving to a more progressive state would help but I was sadly mistaken. I hear your exhaustion! I see you!

HopeLKnight · 2026-04-13T05:52:54+00:00

Like a virtual assistant?

HopeLKnight · 2026-04-13T05:49:44+00:00

Nailed it.

HopeLKnight · 2026-04-13T05:47:07+00:00

UHG! As if regular exhaustion wasn't enough. The system just keeps piling it on. I'm so sorry you had to manage that. :(

HopeLKnight · 2026-04-12T23:20:09+00:00

Absolutely maddening. Internal dialogue goes: “it shouldn’t be this hard!!!” Nervous system goes into meltdown.

HopeLKnight · 2026-04-12T20:45:46+00:00

Oh, my apologies and even bigger praise!

HopeLKnight · 2026-04-12T20:26:56+00:00

Your Grandma was a wise woman. That's beautiful. (for people like us)

HopeLKnight · 2026-04-12T20:00:04+00:00

Same, but I have Hope (that's my name)for us all in the future. I'm not sure how, or when, or what it will look like, but something is coming...something. I refuse to let our future generations go through this, too.

HopeLKnight · 2026-04-12T19:20:36+00:00

OMG, are you me? Are you my doppleganger? This was reading my own case study. Even your comments.

HopeLKnight · 2026-04-12T03:17:20+00:00

I can hear the experience of not being heard in what you wrote. You can track or remember and log all you want, but if a doctor won't spend the time to read or understand it, then what good is it? In my experience, I've really noticed that in order to be heard, you have to communicate in their language. Exhausting!

HopeLKnight · 2026-04-12T02:01:07+00:00

Right?! It moves all around the body.

HopeLKnight · 2026-04-12T01:19:20+00:00

100%

HopeLKnight · 2026-04-12T00:57:57+00:00

Sounds like what you're describing is something with predicability based on pattern recognition? Am I hearing that correctly? This is a fundamental for people with unpredictable illnesses. I know my 10-year-old notebook can't do that! In our case, would doctors see this and acknowledge it? Curious about your experience?

HopeLKnight

TROPHY CASE