ashbet: (Secret)
[personal profile] ashbet
Since DW is taking a while to catch up on my archived entries:

I was in the ER on Monday morning, with what turned out to be a kidney infection. Also picked up a respiratory infection while I was there.

On Tuesday, I took these photos/wrote this post for Facebook, because I felt like it was important -- forgive my semi-feverish rambling, but so many people with invisible illnesses really struggle to be *seen*, so I thought this might help a little bit.

* * *

"But you don't look sick!" is one of the most frustrating phrases to hear, if you're a person who lives with with invisible illness or chronic pain.

Posting these as a direct example -- when you deal with pain and other symptoms every day, many people learn how to cover it up really, really well. But the act of doing so doesn't mean that they aren't genuinely ill.

I'm fighting a combination of kidney infection and respiratory infection in these photos, in addition to Ehlers-Danlos and its myriad bullshit comorbid conditions. I have a fever, and I'm getting hit by the leading edge of a migraine coming on. I feel like death warmed over.

But I *had* to leave the house to take Kira to her eye appointment (they were dilating her eyes, so she couldn't drive), and I chose to look cute and put on makeup because I had a Skype date with Cav planned for this morning, which I was very happy and excited about -- the smile is perfectly genuine!

(FWIW, yesterday, I looked *fucking awful* -- the IV antibiotics and pain meds helped immensely.)

So -- when someone tells you that they're in pain or dealing with an invisible illness... don't judge by appearances, and realize that someone who made an effort today may have only been able to put on pants and leave the house one day this week, so you're seeing them at their best.

(You guys are amazing, and I'm not pointing this at anyone -- but I've dealt with disbelief and dismissal even within my family of origin, and with doctors who couldn't be bothered to deal with a complex patient or a rare disease... and that's an incredibly common experience for people with invisible illnesses -- it happens to almost all of us.)

Thanks for listening -- this is a difficult and painful issue for so many people, and I thought a demonstration might be useful.

On a lighter note, check out Nurse Zuul keeping me company on the pillow in bed <3



Date: 2017-04-13 12:50 am (UTC)
bauhausfrau: (Default)
From: [personal profile] bauhausfrau
It's a testiment to your spirit (not your body and how you feel) that you are smiling in the face of pain. Big hugs hon!

Date: 2017-04-13 04:29 pm (UTC)
bauhausfrau: (Default)
From: [personal profile] bauhausfrau
<3 you hon! I hope today is a better day.

Date: 2017-04-15 09:47 am (UTC)
tommx: (Default)
From: [personal profile] tommx
I'm sorry you've been in so much pain. It is a frustratingly lonely place to be in when others can't or refuse to acknowledge it because you don't currently have a large axe covered in lemon juice embedded in your forehead, There is a prejudice about chronic conditions in our culture that I have found to be incredibly toxic.

When it gets bad, know that you can reach out. We'll be here.

By the way, you look beautiful, pain not withstanding.


Date: 2017-04-13 10:02 am (UTC)
ankaret: Picture of two Maine Coon cats (Holmies)
From: [personal profile] ankaret
Aww, sweet Zuul!

Gavin is always getting kidney infections, so I know how serious they can be. I hope the antibiotics do their job as quickly as possible.

.... Aaaand there has just been a thud from the other side of the bed that turned out to be Sherlock trying to steal my breakfast. Never a dull moment...
.

Date: 2017-04-16 05:18 pm (UTC)
ephemera: celtic knotwork style sitting fox (Default)
From: [personal profile] ephemera
ugh - bonus germs, just what no one needed!

*sympathy*

*virtual tea*

Date: 2017-04-14 11:20 pm (UTC)
From: [identity profile] angldst.livejournal.com
#yup. I purposely get dressed up for my infusion appointments (keeping in mind to wear something that keeps me comfortable and provides access for the infusion & post infusion b12 shot). Makeup is worn, and lippie is bold. Why? You know exactly why. Part & parcel of why I love you so much. <3 <3 <3 I am thinking good thoughts & sending good vibes for swift recovery from the dual-pronged icks.

<3

-d

Date: 2017-04-19 08:20 pm (UTC)
cloudtrader: (Default)
From: [personal profile] cloudtrader
I am continually astounded by how luminous and pretty you are in your pictures with all of the stuff you have to deal with.

Date: 2017-04-20 12:25 am (UTC)
ame_chan: (Default)
From: [personal profile] ame_chan
*love* You know I'm 100% on board with you with all of that. Just wanted to chime in and say, I hear you. I'm sorry you've been more unwell than the usual unwell :-(

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