Invisible conditions and the hyperkinetic author.

They may just be outrunning the collapse.

Yes! This is so true.

Also, from my own personal experience, if I ever share with you the truth of exactly how much pain I'm in, I am being vulnerable to you, and that's a big deal to me.

I hate it when people dismiss that vulnerability, that opening up, as laziness, or whining, or whatever. They don't stay in my life, either.

if I ever share with you the truth of exactly how much pain I'm in, I am being vulnerable to you, and that's a big deal to me.

YES. There are two people (my boyfriend and my best friend) I've ever let be in the same room with me when I'm letting go enough to be In Pain, because while they've never been in that kind of pain themselves, they've learned how to approach/deal with mine specifically so that they can help me ("Do you need the usual? Okay, I'll get that for you."). I could never, ever even think about being that vulnerable around anyone else.

AngelVixen :-)

I *had* an invisible disease. It was curable - once it was diagnosed - which took 15 years. And by "curable", I mean "if we remove all the female bits so she can't have children the excruciating pain will finally stop". Good thing I didn't want kids, huh?

In the meantime, I was "someone who wasn't comfortable with herself as a woman", and once I had a better sense of myself, my problems would magically go away. No one actually ran any tests on me, you understand; I was just a hysterical young woman. It wasn't until I by accident saw a new doctor (because my regular physician was unavailable) who suffered from the same ailment (endometriosis) that anyone took me seriously as "not a potential drug shopper", but rather as "someone who might be seriously ill". Which I obviously couldn't be, even though I was deathly pale, underweight despite eating as much junk as I wanted, and in intense PAIN for several days every month - the kind of pain that leaves you lying in a cold sweat on the bathroom floor, rocking like an autistic child, fluids coming from almost every orifice simultaneously.

/TMI *deep breath*

Yeah, I'm a little touchy about this stuff too.

Some idiot demanded of a friend of mine why she was parked in the handicapped spot because she didn't look sick. She (a NYC'er with attitude I admire) said that he should tell her osteosurgeon that, because he thought otherwise.

Around this time last year my father got a random virus that resulted in an auto-immune disease (which the doctors think is fantastic, because they're learning so much from watching him, yay!) On the outside he looks hale and hearty, but he has to have infusions every three weeks to keep him upright, and even then it still breaks through sometimes and he can't move or see or remember anything. Neither of my uncles really got what it was about until they'd personally seen him collapse and had to drive him home.

I'm so lucky I don't have a chronic illness. From watching what my dad goes through I sympathise with anyone who does. Thanks for posting this.

here via Indigo.

I have a list of illnesses as long as your arm (asthma, IBS, Anemia etc.) and I'm looking at possibly having Fibromyalgia and Type II Diabetes.

I had severe dehydration back in Feb where the symptoms manifested like a CVA (monosyllabic speech, weakness, brain fog, difficulty walking.) I saw a neruo doc who I call Dr. Meanie (or Dr. Asshole depending on my mood that day) who basically after I was tested A-Z neuro-wise, told me that I was fat, depressed, and needed to just shape up. He lectured me for 40 minutes about this, discharged me when I was still unable to walk.

My GP caught the dehydration. 3 DAYS later. I was in the hospital 2.5 days.

Oh and the kicker? I'm uninsured. Been that way since 2001.

*hugs* I just...I feel ya, ya know? Some days we appear just fine, even though we're silently gritting our teeth because just getting out of freaking bed in the AM hurts like hell. We have to move on, because if we didn't, we'd die.

I'm a friend of a friend...and can't agree more with what you've posted. I work in the State/Federal Vocational Rehabilitation program in one of the Pacific NW states...am a 2nd generation VR employee and spent 13 years as a VR Counselor. I now work in the Administration Unit and assist the Field Services Managers run the field operations around our state. I also teach in a Rehabilitation Counselor Education program and present at disability/employment conferences. Even before I was diagnosed with Fibromyalgia and bulging cervical disks (you shared yours...mine are C4-C7) following a car wreck in 2005, I "got" the invisible disability thing. I also have a mild hearing loss, a history of 4 knee surgeries and some significant allergy issues. Thank you for being so candid--and so direct!

I'd love to have you on my FL, if you don't mind...and would it be possible for me to share your post with some of my colleagues here in the Vocational Rehabilitation field?

While I'm sure Seanan will get back to you eventually, because she's awesome like that, since this post is already at 90 comments (!) I'll point you towards the recent periodic welcome post , http://seanan-mcguire.livejournal.com/149533.html , in which the answers to your questions (feel free to friend, and link or quote at will, but "I do ask that a) you let me know, and b) that you ask folks to comment on my LJ, rather than wherever it is you're linking me from (unless you're using the link to support a post of your own, in which case, more power to you). Consider this blanket and forever permission.") are halfway down the page.

I have two problems: endometriosis, and bad knees. The endo pain comes and goes, and lately it's been bad enough that I've made an appointment to ask the doctor, "Am I Old Enough For You To Believe That I'm Really, REALLY Sure I Don't Want Kids So We Can FIX THIS ALREADY?"

The knee thing stemmed from a spring day in my senior year of high school, when I was walking to my boyfriend's house and decided to take a shortcut by jumping his back fence. Both of my knees collapsed. I wound up crawling to his porch on all fours, and it was days before I could stand up. When I finally went to see a doctor, he looked at my legs through my jeans and said "They look fine to me; want some meds?".

It wasn't until years later that a different doctor pointed out that of course I'd have knee problems, because neither one of my legs is straight. I am, in fact, severely knock-kneed. Which I had never noticed before, because who scrutinizes the shape of their legs? And, of course, a good half of my family swears that it's "all in my head."

AMEN!!

I have bad migraines(sometimes with auras...oooh ahhhhh), I'm a borderline asthmatic(I don't get a puffer) and I have arthritis(had it for years and I haven't hit 30 yet). Also, I don't know what it is yet but on occasion, my body and mind get extremely exhausted all of a sudden and I lose consciousness for awhile. Thanks to the barest hint of a warning, I've usually been able to get into some sort of safe position in time. Not quite invisible when it happens but because I'm usually on the ball, people think I'm just napping or dozing off. Because of any one of those or a combination of them on different occasions, I've had people call me out for just being lazy, making excuses, exaggerating, making things up, not getting enough sleep, being rude and outright lying. It annoys me to no end and usually makes me want to yell at them and/or cause bodily harm.

On an amusing note, several years ago, I lost consciousness in a drawing class. Because it was an early morning course, I missed the warning signs and (I'm told) my head just dropped on my drawing mid-charcoal stroke. It scared the crap out of my prof and he forced me to go take a coffee break despite my many reassurances that I was fine and didn't need(what's caffeine gonna do?) or want one. He was all wide-eyed and practically hovering when he walked me to the door. *snarf* :)

Thank you for this post. I have many friends who have diseases/disabilities/etc like this, and this helps round out proper perspective for those of us who have it a bit easier in the body department.

I've got fibromyalgia with a side of rheumatoid arthritis. Usually, I'm using the cane more because the muscle stiffness screws up my balance/makes moving the legs without the assistance of a lever difficult than because of pain. Usually. At any given moment, I can probably get by without the cane (that & a boatload of meds are how I can still dance in an English Country group, though the list of steps I can't do anymore is steadily expanding) but I'm a lot better off at the end of the day if I use it.

Thanks to the miracle of muscle relaxants, I live on the very fine line between being able to function physically or function mentally. On my present drug & dosage I can usually do what I absolutely have to physically, though the next day or 3 may suck. Mentally, it seems to cost me IQ points, concentration, & short-term memory. If I ask you something you already told me earlier in our conversation, that's why -- I really was paying attention, honest!

My rheumatologist has forbidden me to use exercise equipment, so joining a gym is out. I walk when I can, but after a few incidents of abruptly running out of spoons & finding myself unable to get home without 1st sitting on the sidewalk for an hour, I'm rather paranoid about when & how far. Water exercise feels great, but doesn't burn enough calories to affect my weight. Which on anything remotely approaching a normal calorie intake is not going to decrease much from what exercise I get.

As a result, fate occasionally calls on me to enlighten the ignorant: "Why no, I don't need the cane because I'm fat -- I'm fat because I NEED THE CANE!" My other karmic duty seems to be to ream out the morons who leave their shopping carts in handicapped parking spaces. Contrary to what you might expect, it's never the people who use the spaces who do that.

<3

I have trouble getting to water exercise. And yeah, between the meds, the conditions, and the difficulties in trying to exercise, the weight adds up.

I may leave a cart NEAR the Consolation Prize Parking, because some stores don't have a car corral anywhere nearby, but yeah, it's the lazy people who leave them IN our spaces. Grr.

You can try my acupuncture place. My mom went there for sciatica and said it helped (though not permanently or completely). But hey, it's something.

I herniated a disc too, and I have never before been in such awful pain...even now, with heavy painkillers, all that goes away is the radiated pain and I'm left with this burning circle of real pain.

I tried surgery and it went very poorly...woke up unable to feel my left key at all Abe then my doctor cake in to tell me I should "cultivate couch activities." I had been jogging 6 miles a day. And while surgery got me back on my feet eventually, it didn't fix the problem.

However I have found one thing that has helped. McKenzie Method physical therapy. I wanted to tell you in case you hadn't heard about it. Got me back to 85%, I'd say. I didn't realize there were different types of PT; I thought they were all th same and frankly, none of them worked. But this was a lifesaver. I am even planning to get pregnant, which would have been impossible (or nearly) before.