If I can't see it, it doesn't exist...

[LewisLegion]

I'm using this regarding 'invisible' illnesses...and this will probably be long.

There is a hugely disturbing trend for a lot of people to assume if you don't look physically ill, then you're not.

As some of you know, I was recently diagnosed with Fibromyalgia and Chronic Fatigue Syndrome. As well I suffer from asthma, hypothyroidism, and vitiligo universalis. All of them are 'invisible' except the vitiligo...which fortunately is on parts of my body that I can easily hide, so far.

For those unfamilair with Fibro and CFS, let me try and explain it. Imagine the worst flu you ever had...the one where your entire body just ached and you were so weak and exhausted you could barely move. Take that exhaustion and body ache and eliminate the flu symptoms...and have it go on every day...and that's what Fibro and CFS are like. I wake up in the morning feeling like I haven't slept in a week, barely able to move. I have to sit down and rest after a shower...and sometimes during one. Stairs are hard on good days and impossible on bad ones. One hour you could be feeling fairly well and just an hour later you could be in such agony that sounds and wind against your skin hurt. Once an energetic and avid outdoorsperson you now go weeks without walking further than your mailbox and back. Worse, you can't concentrate. You suffer short term memory loss. You become clumsy, both in motion and in speaking, substituting the wrong words, stumbling over pronunciations, unable to articulate at times what you mean to say. Numbers become a completely foreign concept sometimes.

But you LOOK fine. And some days, you FEEL pretty ok. Now imagine you go to the doctor and they tell you it's all in your head. Or tell you directly you're faking it. Now imagine your friends and family think you're just being lazy and whiny. Imagine your coworkers are talking behind your back about all the sick days you take. Imagine that emergency room doctor turning you away, saying that you're just drug seeking.

That's what people with Fibro have to deal with on a daily basis. And not just Fibro...Lupus, MS, and a myriad other diseases. Were we in a wheelchair, or using crutches, or bearing casts or scars or stitches...people would be sympathetic. But since they can't see such things...their sympathy more often than not becomes scorn, disbelief, and derision.

"You're gaining a little weight there...sure you want dessert?"

Yeah, thank you...Cymbalta makes me gain weight. Being unable to excercise when I used to avidly lift weights makes me gain weight. Food makes me nauseous. This dessert I'm reaching for may be the only thing besides a sandwich or soup I've eaten all day. But thank you for assuming that overeating must be the cause of my weight gain. Now I'm not just lazy, I'm a pig.

"But you did it yesterday!"

Yes. Yes I did. And now today I'm in misery BECAUSE I did it yesterday. I'm not physically able to do it today. My hands won't cooperate. My legs feel like burning rubber. To you walking to the store may be a breezy romp a block away...to me it may as well be thirty miles. Over glass. After running a marathon.

"But you were fine five minutes ago!"

Yes I was. That was five minutes ago. Before my hip started aching and I started getting lightning stabs of pain through my shoulders and arms. I could be fine again five minutes from now. I could be worse. I have no way of knowing and that's half my frustration.

"You just want drugs."

Really? Beyond the Cymbalta and my thyroid hormones, I rely mostly on over the counter pain medications to get me through the really bad patches. I hate taking heavy narcotic medications. But there are days I HAVE to take one and a muscle relaxer to even feel like I can continue existing. I don't appreciate being given a 'Help for Drug Addicts' pamphlet simply because I mention I have fibro.

"You don't look disabled!"

Thank you, Total Stranger, for smacking my car and then lecturing me as I got out that the spot was reserved for the handicapped and that you were going to call the cops and have me towed if I didn't move. And when I pointed to my placard, thank you for announcing that I didn't look disabled. You didn't look like a total douchebag either so I guess looks are decieving.

I wonder how things are going to go when I finally get my service dog...

[powerboy]

I have scoliosis. Have had it since I was in 4th grade. It is now that I am feeling more and more. I have a friend that has it really bad and she is still trying to get disability. It sucks for her as she really leans forward as the day goes. I get that at times also. Just because one moment I am fine. Doesn't mean that I will be in another minute or two

[MaggieTheCat]

A friend of mine has rheumatoid arthritis. She's had it since she as 9 months old. I haven't known her very long and she hasn't complained about issues like this, but I'd be surprised if she doesn't go through stuff like this herself. When I first met her, I never would have been able to tell she had any kind of illness; she looks and acts normal. But her husband, whom I know a bit better than her, has told my husband and I about the excruciating pain she endures, and all the medicine she has to take just to be able to walk. He said she'd have been in a wheel chair years ago if not for meds.

It sounds horrible and I can't even imagine what she, or you Lewis, go through. People who assume you're making stuff up, especially doctors, are horrible...I would never dream of suggesting that someone was lying about an invisible illness unless I knew that person really well and had solid proof that they were.

[BlaqueKatt]

seriously you need to get the shirt or bumper sticker that reads-"My disabling chronic illness is more real than your imaginary medical expertise"

My mother in law has Fibro and CFS as well-so indirectly I kinda know what you go through comment wise from people....

[Plaidman]

Agreed. Totally.

Hell, I've had people on MAX yell at me to let them stand down because they themselves are disabled.

I pull out my honored citizens card, show them my cane. Nope. I'm faking.

THen I ignore them.

[KnitShoni]

I know what you mean. I have lupus, rheumatoid arthritis, and am anemic, which causes fatigue often. I used to get a lot of comments about being lazy from people who didn't know better.

[muses_nightmare]

It't not as bad as what you suffer, but I've had people tell me that a migraine is "just a headache" Sorry, but when I can't see for a length of time, and I'm throwing up because of the pain, it's more than a headache.

I have a friend that has Fibro. and just hearing him talk about it sounds terrible, I wouldn't assume anyone was perfectly healthy just because they look it on the outside.

People are morons who think watching any sort of medical show makes them qualified to diagnose someone.

[KnitShoni]

Migraines are definitely more than "just headaches." My husband, father-in-law, and sister-in-law all suffer from them. My father-in-law's migraines get so bad he has to go to the ER.

[Rantsylvania 6-5000]

I hate that shit! Nobody has any business determining whether someone else is sick or not, just because they can't see the pain! My sister has fibromyalgia, not as bad as some people, but it does exist! She's not a hypochondriac, or a prescription drug addict!

Many of the conditions posted here are autoimmune disorders, and they are kind of mysterious, but very real.

People are so stupid. They even challenge whether or not you have an ordinary illness such as the flu! I called out sick from work one day, and a coworker told me that another coworker was talking shit about me and saying, "She was fine yesterday"! Uh yeah, and then I woke up feeling lousy the next day. 'Cause you know, that 's how it happens sometimes!

[Cats]

It't not as bad as what you suffer, but I've had people tell me that a migraine is "just a headache" Sorry, but when I can't see for a length of time, and I'm throwing up because of the pain, it's more than a headache.

I'm guessing the most likely reason is that a TON of people, at least people I've met, often claim that a headache is a migraine for the sympathy. I've met ONE person who I can tell is actually suffering from a migraine when they say they are, and not just faking it.

Heck, I find people even fake regular headaches for the sympathy factor. I've told many a friend/co-worker that if they truly are getting headaches as often as they claim, they need to see a damn doctor, at the very least to rule out the possibility of them being a side effect of a potentially dangerous or life-threatening condition!


So yeah, I can't entirely blame people for not believing. However, if you're vomiting because of the pain, then it's obvious it's not just a regular headache or you're being a faker and they're just being a douche.

[Dreamstalker]

When I was in high school, my mom had to sue the school system for failing to provide the special ed services I needed (the school settled and didn't have to pay anything, but the condition was that they had to provide all needed services at their cost...which still didn't happen; we could have gotten my college fully funded had mom pursued that). Come to find out the headmaster was/is very anti-special education, unless you have an obvious physical disability and/or on track to an Ivy League school.

My mom has fibro; as cases go it's apparently mild, but she still has bad flareups once in awhile. My stepfather (who was a major slacker himself) kept claiming that she was "just lazy"...wait, you're contributing zero to the household (she alone paid the mortgage) and you call her lazy?

[Kimmik]

I suffer from hemiplaegic migraines, Fibermyalgia, and a few other things. In 2001 I lost use of my right side and was given a temp placard. I got the most dirtiest looks for parking in the handicap slot... and what really sucks is I wasn't even driving and my husband had to help get me out of the car. I was able to use my right side again after 6mo and have refused to get a placard again. Not after the abuse that I suffered back then.

Now I just have the hubby drop me off at front or I plan on being worn out and to tired to do anything else that day. I have also suffered abuse if I ask to use a cart at some stores cause I look fine and shouldn't be lazy. Hell I have a wheelchair in the garage.. that i only bring out if i am going somewhere that will take a lot of walking... and I am already tired. I have refused to go places because I know that I wont last long..

And I really hate that hey you're fat just put down the cookie and go for a walk... Gee asshole I would love to go for a walk like I use to ... I would love to hit the gym... I would love for it not to hurt when my daughter pokes me or my husband touches me trying to be gentle but it feels like he just punched me.

I would love not to get migraines that are so bad that as a child a doctor was so desperate that he gave me a prescription for a pill that had a high risk of severe side effects and that now is no longer allowed on the market. Thankfully my mom looked it up and refused to have me even try it.

I wish that people just understood that there are disabilities that are just as devastating as losing a limb or a sense but are hidden and while you cant see what I have it doesn't mean that I am not disabled. Hell I lost a friend who made the mistake of telling me that I was just being a sissy as at least I could walk... with out thinking I lost it and told her that I would gladly spend my life in a chair if it meant that I wouldn't hurt , be mocked, or even be labeled as a Hypochondriac or how ever it is spelled and I would be ecstatic not to have a mini pharmacy in my bathroom.

Thankfully I finally have a good doctor.. One that actually hasn't blown me off and is working with me to figure out how to give me back a semi normal life.

[radiocerk]

I was perfectly fine a year ago, and now I have an autoimmune condition. I'm one diagnostic criteria away from lupus, it's just that none of my internal systems have been attacked yet. So we're calling it imflammatory polyarthalgia.

Which means my hands swell up to the point they look like their webbed. And even a week or two before I could get in to see the doctor, when I couldn't sleep because the joint pain was waking me up constantly, I was constantly chilled, and I could barely move most days without wanting to scream, I got those looks. The "you're just fishing for sympathy" looks. My girlfriend has Fibro. The attitude people have toward her just makes me want to scream sometimes.

There are a lot of illnesses that will make you miserable, if not kill you, that are not visible. But we live in such an entitlement based society, that is full of people who don't want to be bothered with effort, and live off disability when there is nothing wrong with them, and I've met several, that it influences the opinions of others.
People need to learn that it really isn't their concern if anyone is ill or not, and to give people the benefit of the doubt. Or at least, to just shut up.

[Aionios]

To me, the even worse part of invisible illnesses are when they are mental illness.

I have been diagnosed with Social Anxiety, Obsessive-Compulsive Disorder, Bipolar Disorder, and Schizo-typical behavioral disorder, none of which have any real, physical symptoms aside from when I seemingly talk to myself. It's difficult to keep eight separate voices quiet enough to form a valid thought, let alone try to remember something.

My family says "There's no such thing as crazy, you just got the Devil in you", I don't have the social capacity necessary to make RL friends, and my counselor/therapist both actually had the balls to call me Clairvoyant. Let me get this straight - you're telling a man with a severe chemical imbalance that he's psychic. Yeah...where did you get your degree from again? The Steven Seagal school of medicine?

I have a stutter, not severe, but there it is. I have a tendency to count diamond or triangle-shaped objects. I go from suicidal to squirrel on coffee and back again. My short-term memory is more or less shot. I can't sleep most nights. My medications are to stabilize my mood, but do little else. The rest I control somewhat well with counseling.

With that in mind, i'm considered a lazy good for nothing who can't make friends or talk to people, has a selective memory, and is tainted by dark magic. Yeah, still trying to figure that one out.

Moral of the story: I may not have a physical illness like some of you (and I 100% empathize with your situation, and wish you only the best), but I still have a very debilitating condition which has prevented me from leading a functional, productive life, but I am trying my very best.

And the next person who tries to tell me there's no such thing as mental illness is getting Pink-Socked.

Google it.

[KnitShoni]

Where are all these dime-store doctors coming from? Seriously? I'm not even talking about the ones who went to med school and are PAID to treat this stuff. I mean family, "friends," and acquaintances who think they know everything there is to know about illnesses and can say what is and isn't real?