I know where you're coming from, hon. "But you don't look sick" is quite common around me. I can still do a lot of the things I used to do, but I'm feeling it more and more lately, and doing less and less.
I believe I've gotten doctors who say "You're too young to have MS", "Pain isn't associated with MS", "That's not a documented side effect", "How do you know you have MS?" (yes, I've gotten that one too, despite years worth of documentation plus MRIs), "You can't get those kind of cognitive issues as an adult, you must be depressed" (a woman who said ADD didn't exist in adults, and neurologically/MS related ADD apparently didn't exist at all, despite lots of documentation on the subject), and this last time around I got really annoyed at my doc because I told him I was always tired and he asked me what else was new? If he meant it to be joking, it didn't come across in his voice.
I do sympathise. Apparently I'm too young/high functioning/good looking to have MS.
Apparently I'm too young/high functioning/good looking to have MS.
I feel your pain. Possibly literally; I don't know -- different two-letter abbreviation. (Mine's CP.)*
I'm getting tired of having complaints dismissed because the thing I'm complaining about is "normal," even though the person I'm complaining to ought to know better than to think I'm just griping about baseline pain. For example, about 20 months ago, I fell backwards onto the power brick for my laptop, jamming my arm in an unnatural position as I went down. Three days later, I had some kind of routine checkup, mentioned that I'd fallen and was in a hell of a lot of pain, and could someone please check me out, and got a very dismissive "Well, people with CP are always sore after they fall...come back in a couple weeks if you're still feeling sore." (Yeah, like at 32 years old, I wouldn't know that already!)
Fast-forward a couple of weeks. I'm in absolute agony and can barely use my right arm. I've developed some weird symptoms, like my fingers going numb and my hand unpredictably and intermittently springing open when I try to grip something. (The first time I dropped the water pitcher on the floor, you should have heard what I said, or maybe not.) I went back to the doctor, they did tests, and said, "Oh, you've torn a ligament in your rotator cuff, and now you have an impingement syndrome. The ball is too far forward in the joint socket, and it's pinching the nerve..."
So I'm in physiotherapy for the next ever, the shoulder will probably never stop bugging me on rainy days and when I haven't done enough exercise, and my weight-lifting is seriously curtailed.
Fast-forward about another six months and I'm in my annual physical, and my real doctor (as opposed to the stupid-ass resident who said it originally) is giving me my annual physical. She's looking at my torso, and she runs her finger along my clavicle on the injured side, and says, "You have a bump right there. Did you break your collarbone once?" Judging by the timeline of the pain at the time, I bet I did.
If that were the only incident, I'd shrug, say "Fuck it," and leave it, but it's sadly not.
Also, "Apparently I'm too young/high functioning/good looking to have CP" is exactly the reason why I can't get a disability pension, which would be nice as a fallback, since I can work most of the time, but I actually seriously considered quitting my job recently if I wasn't getting any better, or at least trying to negotiate for a leave of absence, as I seem to have contracted Fifth Disease. In children, it's pretty harmless. In adults, it manifests as rheumatoid arthritis. Screeaaam! Stiff joints on stiff muscles! Two great tastes that taste like shit together!
Fortunately, I don't have the problem of people at the vet's office (even the stupidest of the residents) thinking that my disability doesn't exist. I'm pretty visibly impaired; but OTOH, it's the invisible parts of the visible impairment that really get you. The limp and the short leg aren't really a problem. The problems are the chronic fatigue, the chronic pain, the spasticity (not readily apparent to a layperson), the reflux disease and digestive problems, the proneness to respiratory infections of all kinds (including bronchitis and pneumonia)...
_____________ * Cerebral Palsy, for the Temporarily Able-Bodied or uninitiated in the crowd.
Do yourself a favor, don't go down to part time if you can help it, if you can get a doctor to go to court with you, go straight from full time to not working. It'll kill you in the short term, I know, but in the long term you'll actually get all the disability pay you deserve. SSDI is based on the last two years of your income, and if your income was only part-time income, then that's what it's based on.
My biggest problem is fatigue. It's been getting worse lately. And yet it's like it's totally being ignored.
I need new doctors. I miss my docs up in jersey, I had at least one who actually *listened*... It's a rare thing in docs nowadays.
I'm sorry you have to deal with all of this crap... When my MS has flared up badly I've had everything from spasticity to pain to numbness to fatigue to the "MS Hug" (feels like there's a box around your lungs and you can't breathe)... I've been lucky that in the last few years that most of it doesn't show. But it's only lucky in the respect that people don't see me as my disability. It's unlucky in that they won't take it seriously, either. Especially because multiple sclerosis is so random that I can be fine one day and suck the next. A lot of the time I'll be "fine" only because I'm borrowing spoons from tomorrow, and I'm going to pay for it later. It's the only way I've lived through recent job interviews.
Good luck. I'm really glad I posted about the invisible disability week, because dglenn isn't the only one who's since posted about it... And the more people realize what the "big deal" is, the better it will be on those of us whose disabilities cannot be seen.
I'm actually working part-time now, and making better money than I ever have before. Part of that is because I went from being an employee to a consultant, and now I'm charging almost twice what I was making before. It's working out well, because I only work 3 days per week, meaning that if I know a crash is coming, chances are I can put it off until I don't have to work. I've missed very little work in the past year compared to when I was working full time.
SSDI is based on the last two years of your income, and if your income was only part-time income
Not a problem: I live in the jolly old Province of Ontario, so disability is around $1000 a month regardless of whether I was making minimum wage before becoming unable to work, or what. Thing is, I can't keep the doctors from giving me these nice, positive reviews: "She can work if she can find suitable employment." The problem is, it has taken me eight years or so to find it, and I've been pretty much destitute in the interim...
Ah, with canadian healthcare, you can afford to do the consultant thing... I would do it as well if it weren't for the fact that I'd lose my benefits, and my husband's prescription benefits suck (only does a max of $1500 per quarter, and Rebif costs about $10,000 per year).
Nice to know how the canadian system works, though... I didn't realize that's how they do disability up there.
Good to know you can work as a consultant, though!
One other nice thing about being on disability is that my prescription drugs would be covered. As it is, I have times where I sort of do an end-run around the system. I'd vote for someone who'd put pharmacare on the provincial health services in a heartbeat, as would likely 90% of everyone else.
One nice surprise -- because I have strabismus (which is considered a "medical condition"), my recent eye exam was covered by the province. The "free checkup every two years" thing stopped for some reason or other, probably largely to do with a series of antigovernment Premiers we've had around here...
Interrobang's in Canada; I'm not sure how similar/different their closest paralel to SSDI is.
And I hear you regarding the mixed blessing of invisibility: I hate being treated as fragile or crippled (even when I need to be treated that way, as folks who've tried to care for me can attest), so I'm glad to be able to pass for able-bodied -- especially since my self-image, after nearly a decade and a half, still hasn't caught up to my medical reality. At the same time, when people a) fail to believe and accomodate my disability, or b) understand when reminded but forget often because there's no visible reminder constantly there, the invisibility is a liability.
Yeah, I want to eat my cake and still have it. But I'll try to make the best of the hand I'm dealt, I guess, and hope spreading a little education helps. Where I get bitter about it is when it's the doctors ignoring or trivializing things.
The example I'm most annoyed about was more than ten years ago and still upsets me enough that I have trouble mentioning it without ranting. (Short version: if I can no longer do my job because of it, you don't get to tell me I "have nothing to complain about".)
Fatigue seems to be even harder to get people to take seriously than unexplained pain. There seems to be a lot of "oh, everybody gets tired sometimes," balanced against roughly the same amount of, "well you must be depressed". (Yes doctor, I am aware that depression can cause fatigue -- and pain -- but the timing of the symptoms doesn't match that diagnosis <verb> you very much.)
As for the "not listening" thing, there's that whole "we want you to try antidepressants again" refrain that keeps comin' around again on the guitar (whether they think I'm depressed or not -- antidepressants are often used to help regulate sleep in fibromyalgia patients). Gee, you'd think that my having explained nearly offing myself due to drug-induced depression and a whole collection of paradoxical reactions to psych meds would make that obviously a bad idea ...
There's another difference between me and you: I can't pass, and I try hard. On the other hand, the fact that I do try hard means that everyone thinks I'm "basically normal except for limping," and it ain't so... That's more or less what I meant about "visible/invisible" up there. Yes, it's obvious that I have a disability. What's not obvious are the insidious, genuinely trouble-causing effects. :(
Of course, I'm preaching to the choir, if not the clergy here.
Frankly, I think you have a malpractice suit--the resident refused to examine you when you reported symptoms, with lasting and dangerous effects. And I think you should bring one, not just for any money, but because it might get a point through: if you don't sue for malpractice, he'll never even know he fucked you up.
I actually wouldn't be interested in bringing one. I don't even remember the name of the resident, for one thing. If I could have anything related to the incident, I'd like about ten minutes to talk to him and say, listen, if you're going to be a competent doctor at all, you're really going to have to learn that if someone who already has chronic pain tells you they're really sore, check it out. Maybe it's nothing. So what? Doctors should always operate on the "better safe than sorry" principle.
See for me, I'm in the opposite condition. summers slaughter me, since MS symptoms tend to go up when the heat goes up. I started a new job this past summer, and I'm already looking for something new because the heat killed me with the fatigue and concentration issues so badly I haven't been able to properly survive the 90 days.
Mind you, I'm also an asthmatic that gets triggered by mold and cold. So I just get hit the other way in the fall. *sigh*
(no subject)
I believe I've gotten doctors who say "You're too young to have MS", "Pain isn't associated with MS", "That's not a documented side effect", "How do you know you have MS?" (yes, I've gotten that one too, despite years worth of documentation plus MRIs), "You can't get those kind of cognitive issues as an adult, you must be depressed" (a woman who said ADD didn't exist in adults, and neurologically/MS related ADD apparently didn't exist at all, despite lots of documentation on the subject), and this last time around I got really annoyed at my doc because I told him I was always tired and he asked me what else was new? If he meant it to be joking, it didn't come across in his voice.
I do sympathise. Apparently I'm too young/high functioning/good looking to have MS.
Visible/Invisible
I feel your pain. Possibly literally; I don't know -- different two-letter abbreviation. (Mine's CP.)*
I'm getting tired of having complaints dismissed because the thing I'm complaining about is "normal," even though the person I'm complaining to ought to know better than to think I'm just griping about baseline pain. For example, about 20 months ago, I fell backwards onto the power brick for my laptop, jamming my arm in an unnatural position as I went down. Three days later, I had some kind of routine checkup, mentioned that I'd fallen and was in a hell of a lot of pain, and could someone please check me out, and got a very dismissive "Well, people with CP are always sore after they fall...come back in a couple weeks if you're still feeling sore." (Yeah, like at 32 years old, I wouldn't know that already!)
Fast-forward a couple of weeks. I'm in absolute agony and can barely use my right arm. I've developed some weird symptoms, like my fingers going numb and my hand unpredictably and intermittently springing open when I try to grip something. (The first time I dropped the water pitcher on the floor, you should have heard what I said, or maybe not.) I went back to the doctor, they did tests, and said, "Oh, you've torn a ligament in your rotator cuff, and now you have an impingement syndrome. The ball is too far forward in the joint socket, and it's pinching the nerve..."
So I'm in physiotherapy for the next ever, the shoulder will probably never stop bugging me on rainy days and when I haven't done enough exercise, and my weight-lifting is seriously curtailed.
Fast-forward about another six months and I'm in my annual physical, and my real doctor (as opposed to the stupid-ass resident who said it originally) is giving me my annual physical. She's looking at my torso, and she runs her finger along my clavicle on the injured side, and says, "You have a bump right there. Did you break your collarbone once?" Judging by the timeline of the pain at the time, I bet I did.
If that were the only incident, I'd shrug, say "Fuck it," and leave it, but it's sadly not.
Also, "Apparently I'm too young/high functioning/good looking to have CP" is exactly the reason why I can't get a disability pension, which would be nice as a fallback, since I can work most of the time, but I actually seriously considered quitting my job recently if I wasn't getting any better, or at least trying to negotiate for a leave of absence, as I seem to have contracted Fifth Disease. In children, it's pretty harmless. In adults, it manifests as rheumatoid arthritis. Screeaaam! Stiff joints on stiff muscles! Two great tastes that taste like shit together!
Fortunately, I don't have the problem of people at the vet's office (even the stupidest of the residents) thinking that my disability doesn't exist. I'm pretty visibly impaired; but OTOH, it's the invisible parts of the visible impairment that really get you. The limp and the short leg aren't really a problem. The problems are the chronic fatigue, the chronic pain, the spasticity (not readily apparent to a layperson), the reflux disease and digestive problems, the proneness to respiratory infections of all kinds (including bronchitis and pneumonia)...
_____________
* Cerebral Palsy, for the Temporarily Able-Bodied or uninitiated in the crowd.
Re: Visible/Invisible
My biggest problem is fatigue. It's been getting worse lately. And yet it's like it's totally being ignored.
I need new doctors. I miss my docs up in jersey, I had at least one who actually *listened*... It's a rare thing in docs nowadays.
I'm sorry you have to deal with all of this crap... When my MS has flared up badly I've had everything from spasticity to pain to numbness to fatigue to the "MS Hug" (feels like there's a box around your lungs and you can't breathe)... I've been lucky that in the last few years that most of it doesn't show. But it's only lucky in the respect that people don't see me as my disability. It's unlucky in that they won't take it seriously, either. Especially because multiple sclerosis is so random that I can be fine one day and suck the next. A lot of the time I'll be "fine" only because I'm borrowing spoons from tomorrow, and I'm going to pay for it later. It's the only way I've lived through recent job interviews.
Good luck. I'm really glad I posted about the invisible disability week, because
Re: Visible/Invisible
SSDI is based on the last two years of your income, and if your income was only part-time income
Not a problem: I live in the jolly old Province of Ontario, so disability is around $1000 a month regardless of whether I was making minimum wage before becoming unable to work, or what. Thing is, I can't keep the doctors from giving me these nice, positive reviews: "She can work if she can find suitable employment." The problem is, it has taken me eight years or so to find it, and I've been pretty much destitute in the interim...
Re: Visible/Invisible
Nice to know how the canadian system works, though... I didn't realize that's how they do disability up there.
Good to know you can work as a consultant, though!
Re: Visible/Invisible
One nice surprise -- because I have strabismus (which is considered a "medical condition"), my recent eye exam was covered by the province. The "free checkup every two years" thing stopped for some reason or other, probably largely to do with a series of antigovernment Premiers we've had around here...
SSDI
And I hear you regarding the mixed blessing of invisibility: I hate being treated as fragile or crippled (even when I need to be treated that way, as folks who've tried to care for me can attest), so I'm glad to be able to pass for able-bodied -- especially since my self-image, after nearly a decade and a half, still hasn't caught up to my medical reality. At the same time, when people a) fail to believe and accomodate my disability, or b) understand when reminded but forget often because there's no visible reminder constantly there, the invisibility is a liability.
Yeah, I want to eat my cake and still have it. But I'll try to make the best of the hand I'm dealt, I guess, and hope spreading a little education helps. Where I get bitter about it is when it's the doctors ignoring or trivializing things.
The example I'm most annoyed about was more than ten years ago and still upsets me enough that I have trouble mentioning it without ranting. (Short version: if I can no longer do my job because of it, you don't get to tell me I "have nothing to complain about".)
Fatigue seems to be even harder to get people to take seriously than unexplained pain. There seems to be a lot of "oh, everybody gets tired sometimes," balanced against roughly the same amount of, "well you must be depressed". (Yes doctor, I am aware that depression can cause fatigue -- and pain -- but the timing of the symptoms doesn't match that diagnosis <verb> you very much.)
As for the "not listening" thing, there's that whole "we want you to try antidepressants again" refrain that keeps comin' around again on the guitar (whether they think I'm depressed or not -- antidepressants are often used to help regulate sleep in fibromyalgia patients). Gee, you'd think that my having explained nearly offing myself due to drug-induced depression and a whole collection of paradoxical reactions to psych meds would make that obviously a bad idea ...
Passing
Of course, I'm preaching to the choir, if not the clergy here.
Re: Visible/Invisible
Re: Visible/Invisible
(no subject)
Yah, I know you do, and better than most. *HUG*
(no subject)
Are you enjoying the signs of fall coming as much as I am? The cooler days, the vivid blue skies, the aching hands...
(no subject)
Mind you, I'm also an asthmatic that gets triggered by mold and cold. So I just get hit the other way in the fall. *sigh*