![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
Entry tags:
A brief digression on the subject of invisible and chronic illness
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
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
no subject
no subject
Made a big difference to be looking forward to catching up with Adrian and Bean (Lucy was at a writing group meeting, will hopefully see her again soon), because my Dearly Beloveds always bring a smile to my face :)
But, yeah. I can do this for a few hours, but by the time I went to bed, I looked like I'd been hit by a truck again. Today, not so good.
I've seen a lot of people effectively punished for their ability to look and act "not sick" for a little while at a time . . . but what people don't understand is that there's a real physical toll to be paid. And we don't have the option of just giving up -- nobody's going to take care of us, if we don't take care of ourselves.
You know this, and you're an amazing friend who I treasure very much. Thanks for your kind words, sugar -- you Get It, and I appreciate it greatly!
*love*
-- A <3
no subject
no subject
Definitely improving -- lower fever, lungs less crappy. As long as I can avoid setbacks, I hope to be over this by Sunday. *fingers crossed*
<3!
no subject
When it gets bad, know that you can reach out. We'll be here.
By the way, you look beautiful, pain not withstanding.
no subject
<3!
no subject
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...
.
no subject
Got my labs back yesterday, and it's resistant to the oral antibiotic they were giving me, but thankfully they had given me a different IV antibiotic in the ER. Picked up my new prescription, need to spend 10 days on it.
Feeling quite a bit better this morning (ALL PRAISE TO THE CREATORS OF NYQUIL!!), although still sick and crackly in the lungs -- but my fever is lower and I'm less miserable :)
Hope I can kick this fairly quickly -- I'm encouraged by how well the kidney stuff responded to my treatment in the ER.
*fingers crossed!*
Hehe, naughty Sherlock!! Zuul is yawning in my lap (I'm still in bed), and will probably try to con me into a hobbit-style Second Breakfast, even though I know perfectly well that Kira fed her at 7 ;)
<3!
no subject
*sympathy*
*virtual tea*
no subject
(Oh, man, I need the tea -- had to go a week without caffeine due to the UTI/kidney infection, and mint "tea" is just not the same!)
The bonus germs are slowly exiting my system -- I'm just about over this, although it's taking its own sweet time going away.
<3!!!
<3!
no subject
<3
-d
no subject
Yes, you and I very much get each other on this.
**hugshugshugs**
<3!
no subject
no subject
no subject
no subject