Is Anyone Invisible?
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I am sorry ,I owe each of you an appology and an explaination.By invisible I mean disabilities that don't show on the outside makeing some people remark "But you don't LOOK sick.I have a number of conditions but the one that's giving me the most problems lately is Meniers disease.I've been in the fog stage for a few weeks.Menieres causes unpredictable attacks of vertigo think dizziness multiplyed by1,000.Literaly coming with no warning you are unable to remain standing,nauses and at times vomiting occurs.You will be unable to walk even with help,all you can do is keep still with your eyes closed until the dizziness subsides enough for you to get in a recliner or bed where you will sleep for 4 - 12 hours. Usually when you wake up you will have a foggy feeling,like in fibromyalgia.This along with confusion,extreme fatigue,inability to concentrate,residual dizzy spells if you try to look up or down.You try to keep any movement of your head from occuring and your sence of balance is off.This spell can last days,weeks or even months.Forgot to mention the total hearing loss in my left ear and the CONSTANT buzzing in the same ear which I've had for a little over a year;this is part of it also.Been to M.D.s ,looking to have my inner ear removed to perhaps stop this.Need to go ,God bless all,Questions I don't mind,Thank for listening,GKK/Sue
You have someone who totally understands.
My hubby is disabled---a neck injury. Since it’s not visible to the eye, we have run into the disbelievers, and they can be boisterous about “the faking it for the money” attitude. That is a laugh in itself because before the injury, there was a lot more money coming in.
Once most of the disbelievers spend time around him, they see the pain he has to deal with, but then there are the few that can’t see beyond their own prejudice thoughts.
I have a friend, more like a sister, who has Meniers disease. I’ve seen this hit her. In the matter a split second she can be down and when I say down, I mean it. She can’t even crawl to the bathroom.
She broke her femur bone and was bedridden for a while so they got a port-a-potty. When the Meniers hits, there is many a time when her husband hauls it out and has to help her on and off.
Luckily, she has never been out when a bad case hit, but, with her, the weather has a lot to do with it, so she knows when to stay home.
My hubby is disabled---a neck injury. Since it’s not visible to the eye, we have run into the disbelievers, and they can be boisterous about “the faking it for the money” attitude. That is a laugh in itself because before the injury, there was a lot more money coming in.
Once most of the disbelievers spend time around him, they see the pain he has to deal with, but then there are the few that can’t see beyond their own prejudice thoughts.
I have a friend, more like a sister, who has Meniers disease. I’ve seen this hit her. In the matter a split second she can be down and when I say down, I mean it. She can’t even crawl to the bathroom.
She broke her femur bone and was bedridden for a while so they got a port-a-potty. When the Meniers hits, there is many a time when her husband hauls it out and has to help her on and off.
Luckily, she has never been out when a bad case hit, but, with her, the weather has a lot to do with it, so she knows when to stay home.
My mother has disabilities that others cannot see. She has had carotid surgery, only on...the other is 100% blocked. Leaves a lack of blood flow to the brain. She does not respond as quickly as most would prefer. She has also had one third of a lung removed and has Emphysema in the other. Leaves her unable to walk very far before having to rest. She just had emergency open heart surgery, we were given 2 days notice. She still is looking at colon surgery as soon as she heals from the O.H. surgery. From looking at her no one would know that any of this is a part of her life.
Wow Hz, that is a lot. I hope you & others are giving her a supporting shoulder, sounds like she needs it.
If you need a shoulder to cry on, we're here.
Best wishes and prayers
If you need a shoulder to cry on, we're here.
Best wishes and prayers
I was diagnosed with Fibromyalgia about 15 years ago. I'm on Social Security Disability now and was able to find a part-time job doing data entry. I think my main problem is the Chronic Fatigue. I just have hardly any energy to do much of anything. The pain, sleep problems, and memory problems ain't no fun either! The worst thing is being invisible. People just don't get it when I try to explain why I just can't do everything they want me to do or think I should be able to do. They say mean things like "it must be nice to get all that free money!" They have no clue. I'm 53 now and have worked since I was 16, most of the time full-time hours with a lot of overtime. I feel I have earned every penny of the Social Security and it's not even that much considering all the years I paid into it. People talk about me at work and make snide remarks like "it must be nice to have an ergonomic keyboard" blah, blah, blah. I try to be friendly and positive, but mostly keep to myself at work. I have to be careful to not overdo too much activity in one day, because I will pay for it the next day/s and won't be able to do anything. When this happens, people say stuff like, "you just gotta push yourself and make yourself do it." Believe me, I would if I could. I'm thinking of getting a cane. It would serve 2 purposes. I wouldn't be so afraid of falling due to weakness and pain while I'm walking AND my disability wouldn't be invisible!
yes. It's awful, I know. I wrote about it in my blog last month. I also recommend the site But You Don't Look Sick and the essay in my sig line by Christine M, to many friends and family members. It helps them understand a little.
Right now I'm too tired to go into it, but I have Fibromyalgia and Myofacial Pain Syndrome, Rheumatoid Arthritis, Osteoarthritis, Degenerative Disc Disease, Herniated discs, Osteopenia, Spinal Stenosis, Cardiomyopathy, blah, blah, moremoremore.. just take me out back and shoot me please and thank you.
The only things I have left in this world are my hope, faith, and my children and loved ones. They keep me strong.
Right now I'm too tired to go into it, but I have Fibromyalgia and Myofacial Pain Syndrome, Rheumatoid Arthritis, Osteoarthritis, Degenerative Disc Disease, Herniated discs, Osteopenia, Spinal Stenosis, Cardiomyopathy, blah, blah, moremoremore.. just take me out back and shoot me please and thank you.
The only things I have left in this world are my hope, faith, and my children and loved ones. They keep me strong.
Thanks jj2!
GKK-Janet-leannebug, Ya'll hang in there and just be yourself.
We don't need everyone to understand, just those that are a part of our lives.
Me-personally, I do not have these disabilities but, helping someone very close to me allows me to understand more and makes me look for what my eyes cannot see. I use my heart and my ears, they sometimes 'see' more than my eyes ever could.
Happy Mothers Day ladies.
GKK-Janet-leannebug, Ya'll hang in there and just be yourself.
We don't need everyone to understand, just those that are a part of our lives.
Me-personally, I do not have these disabilities but, helping someone very close to me allows me to understand more and makes me look for what my eyes cannot see. I use my heart and my ears, they sometimes 'see' more than my eyes ever could.
Happy Mothers Day ladies.
Yes I do. I have MS and because I am still able to walk(contrary to docs prediction I would be wheel chair bound 15yr ago)
Whenever I park in a handicapped parking spot I feel so quilty for some reason. I see these older people with canes and walkers and I am not. I only go out when I feel up to it, which is not often. Well yes I do have a walker and canes but only use them when I get really bad.
On the outside I look normal and healthy. You get inside my body and you find out how really bad it feels. Some days I can see some days I can't. Some days I can walk fine, some not. We won't even go into memory or depression. Depression as a symtom of MS not feeling sorry for myself.
I have had MS sinse I was 17 or younger so its part of me.
The hardest part is my children. I never talk about my MS to them and they tend to forget that I can't do the things I used to. Heck sometimes I go into denial and say the heck with this I will do it any way. Until I try that is.
It can be so very very frustrating
I am glad I found this group. Hope to be back more often. If you'll let me!
Whenever I park in a handicapped parking spot I feel so quilty for some reason. I see these older people with canes and walkers and I am not. I only go out when I feel up to it, which is not often. Well yes I do have a walker and canes but only use them when I get really bad.
On the outside I look normal and healthy. You get inside my body and you find out how really bad it feels. Some days I can see some days I can't. Some days I can walk fine, some not. We won't even go into memory or depression. Depression as a symtom of MS not feeling sorry for myself.
I have had MS sinse I was 17 or younger so its part of me.
The hardest part is my children. I never talk about my MS to them and they tend to forget that I can't do the things I used to. Heck sometimes I go into denial and say the heck with this I will do it any way. Until I try that is.
It can be so very very frustrating
I am glad I found this group. Hope to be back more often. If you'll let me!
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I have diabetes and HBP, most of the time I am fine, but there are days I get very tired and just can't get around. I walk at least 5 days a week (1 to 2 miles at a time) so it's not just because I sit on my behind.
My husband has heart problems and back problems. he has a birth defect (Syrinx) that is void in his spine that brain/spinal fluid collects in/ that would have turned into spina bifita if it had continued..a slipped disk right next to the birth defect so they can't touch it. He would leak brain fliud from the defect. He had a minor surgery near his should blade that didn't heal right and caused a nerve bundle to go nuts. To remove it means he would most likely lose the feeling in his left arm.
Mike takes a boatload of pain meds..any one of them would knock me out for a day. Then he takes another boatlaod for heart problems, and yet more to help with all the side effects of the first two boat loads!
Yes he uses a handicapped space. he gets tired walking across a room! But according to social security he is NOT Handicapped! (DMV feels differently)
I love the fact that people don't see him as disabled, but I also hate it..he can't do the things he used to and when I carry things or push my own cart ect. people look at him like he is being rude to me. Pushing, pulling or lifting hurts his back or gives him angina. I would rather carry a bag then him!
Sometimes I would love a big sign that says "mind your own business"!
My husband has heart problems and back problems. he has a birth defect (Syrinx) that is void in his spine that brain/spinal fluid collects in/ that would have turned into spina bifita if it had continued..a slipped disk right next to the birth defect so they can't touch it. He would leak brain fliud from the defect. He had a minor surgery near his should blade that didn't heal right and caused a nerve bundle to go nuts. To remove it means he would most likely lose the feeling in his left arm.
Mike takes a boatload of pain meds..any one of them would knock me out for a day. Then he takes another boatlaod for heart problems, and yet more to help with all the side effects of the first two boat loads!
Yes he uses a handicapped space. he gets tired walking across a room! But according to social security he is NOT Handicapped! (DMV feels differently)
I love the fact that people don't see him as disabled, but I also hate it..he can't do the things he used to and when I carry things or push my own cart ect. people look at him like he is being rude to me. Pushing, pulling or lifting hurts his back or gives him angina. I would rather carry a bag then him!
Sometimes I would love a big sign that says "mind your own business"!
MaryKay, we should live next door. RW (hubby) goes through the same thing, just another reason (neck injury). I love the way you discribed it---takes a .... load to counter the other .... loads. It's so true.
By the way, it tooks three tries and a lawyer to get him on disability.
And, like you, I walk and I get tired too but I figure one of us has to keep moving and he is incapable.
And the people I hate the worst is the ones that take a look at him and assume he is faking. I just wish they could spend a day in his body. At the end, they'd be screaming for mercy.
By the way, it tooks three tries and a lawyer to get him on disability.
And, like you, I walk and I get tired too but I figure one of us has to keep moving and he is incapable.
And the people I hate the worst is the ones that take a look at him and assume he is faking. I just wish they could spend a day in his body. At the end, they'd be screaming for mercy.
Fibromyalgia+CEBV/CFS+MCS+PCOS+Sjogren's+juvenile-onset RA. Also hypoglycemic. My health problems are only invisible because I myself don't have the energy to be seen any more. Reflecting light in the visible spectrum just takes too much effort.
I also have multiple spinal injuries and am missing most of the cartilage in both knees. Anyone know of a glucosamine-chondroitin-MSM flavored juice?
I also have multiple spinal injuries and am missing most of the cartilage in both knees. Anyone know of a glucosamine-chondroitin-MSM flavored juice?
I have both Multiple Sclerosis and Chronic Regional Pain Syndrome in my left foot and right shoulder. I am on Social Security Disability, but tried to work for months after I began having symptoms of the MS at age 39. I have many of the same issues as suddenlyno when it comes to the MS. The problem with my foot causes me to be unable to stand or walk for any length of time, and I worked for five years with that condition. As for my shoulder, I can't use it over my head or pick up more than 10 pounds.
When suddenlyno was talking about feeling guilty parking in a handicapped spot, it reminded me of something that happened to me. I parked in a handicapped spot at a major grocery store. I put my placard on my mirror, got out of the car, and was verbally assaulted by a woman in her car for taking a handicapped spot. She literally was yelling at me, "how dare you? there is nothing wrong with you, there are people who need that spot and you are taking it because you are too lazy to walk a little extra distance". I was totally flabbergasted to say the least. I proceeded to show her my medical alert bracelet for the MS, and tried to explain to her about invisible disabilities and how dare she question whether or not I needed to park in a handicapped spot. She walked away with a red face.
When suddenlyno was talking about feeling guilty parking in a handicapped spot, it reminded me of something that happened to me. I parked in a handicapped spot at a major grocery store. I put my placard on my mirror, got out of the car, and was verbally assaulted by a woman in her car for taking a handicapped spot. She literally was yelling at me, "how dare you? there is nothing wrong with you, there are people who need that spot and you are taking it because you are too lazy to walk a little extra distance". I was totally flabbergasted to say the least. I proceeded to show her my medical alert bracelet for the MS, and tried to explain to her about invisible disabilities and how dare she question whether or not I needed to park in a handicapped spot. She walked away with a red face.
RW disability is a neck injury so it's not visible to others. I can't count the times people have given him that "glare" when he gets out of a car. "They" can not see that every step he takes jars his neck which sets those ultra sensitive nerves in his neck to screaming.
At first he wouldn't use handicapped parking but now it's so bad, he doesn't think twice.
At first he wouldn't use handicapped parking but now it's so bad, he doesn't think twice.
Yes, I know this feeling. On the outside I look perfectly "normal" but my Fibro and Bipolar are totally destroying me. It makes it harder to get SSI, which I am working on now and have a lawyer for it. Also makes it harder for friends and other people to understand.
I have Aspergers and I am bipolar, and whilst the bipolar is sometimes evident, the Aspergers definetly isn't. I've even had one co-worker tell me that Autistic people should be locked in asylums, and when I told her that I was Autistic, she replied "Yes, but you're ok, because you don't look like you have anything wrong with you!" I was so angry at that comment.
Yep, invisible here! Severe fibro, CFS, Sleep disorders, yada yada yada... and now they're telling me I might have disease that can only be caused by a brain tumor, of all things. Been totally disabled with it since I was 29... am 36 now. I get A LOT of odd curious looks. Drives me bonkers. Makes me nuts to have to explain to people, but if I don't they just think I'm lazy and antisocial. Nope... just going thru my days at richter scale level pain. rofl
Makes me nuts to have to explain to people, but if I don't they just think I'm lazy and antisocial. Nope... just going thru my days at richter scale level pain. rofl
Got a husband that has been disabled for about twenty years. He is now 63 and we both seen those looks because his disability isn't visible to the eye.
Here's the kicker. He had surgery on his neck about twenty years ago and still was in pain. Pain that got worse each passing year and VA doctors kept doing test and not finding anything wrong with his neck, but kept increasing the meds---and adding more of this and that. He got to the point that he was pretty much a spaced out zombi.
Then came a new VA doctor who was "going to find out what was wrong and make things better."
Had the same test run and blah blah blah. Went into see her and nothing was found and she hinted (really obviously too) that it was all in his head.
I'd been trying for years to get him to see doctor outside of the VA, and he kept saying no because he figured since he'd seen so many at the VA that it wouldn't do any good. When we left the VA after hearing the 'head' thing, I flat out told him that he was going to see my doctor.
He didn't think that it would do any good, but he also knew I was ......, he agreed.
He went. He probably wasn't in the doctor's office ten minutes before the doctor told him that he had a torn rotator cuff. Then came surgery and a step back at least 15 years in time. He still has pain but it's easily dealt with.
And the reason for this story is because of lot of the people that we know that thought he was faking it now know he wasn't. At least one has had a torn rotator cuff and shivers at the thought of being in pain from it that many years.
Just goes to show you that some people are non caring idiots so just ignore them.
Here's the kicker. He had surgery on his neck about twenty years ago and still was in pain. Pain that got worse each passing year and VA doctors kept doing test and not finding anything wrong with his neck, but kept increasing the meds---and adding more of this and that. He got to the point that he was pretty much a spaced out zombi.
Then came a new VA doctor who was "going to find out what was wrong and make things better."
Had the same test run and blah blah blah. Went into see her and nothing was found and she hinted (really obviously too) that it was all in his head.
I'd been trying for years to get him to see doctor outside of the VA, and he kept saying no because he figured since he'd seen so many at the VA that it wouldn't do any good. When we left the VA after hearing the 'head' thing, I flat out told him that he was going to see my doctor.
He didn't think that it would do any good, but he also knew I was ......, he agreed.
He went. He probably wasn't in the doctor's office ten minutes before the doctor told him that he had a torn rotator cuff. Then came surgery and a step back at least 15 years in time. He still has pain but it's easily dealt with.
And the reason for this story is because of lot of the people that we know that thought he was faking it now know he wasn't. At least one has had a torn rotator cuff and shivers at the thought of being in pain from it that many years.
Just goes to show you that some people are non caring idiots so just ignore them.
I'm invisible too, but mostly because I keep myself that way. Multiple Sclerosis is my main demon. I am ambulatory, but remaining vertical is not something that I can rely on without a cane, so I use one all the time. My arms, legs, hands, and feet, upper back and some of my facial areas are numb. The ground under my feet can't be felt unless I'm walking or shifting from foot to foot. Other areas of skin are ultra-sensitive to the point where a hair on my face feels like a needle. Raindrops and snowflakes burn like sparks. Everything vibrates as if I'm holding on to an electric toothbrush.
The vision in my right eye was destroyed by optic neuritis when my MS began. I have frequent partial seizures that just look like quick jerks of my arm, but they ended my fifteen year career as a professional wildlife artist along with the vision problems. The fatigue is debilitating, but I'm not sure how much of that is because of all of the medications that I take or inject daily. Choking is becoming more and more of a problem. I wake up unable to breathe because I've choked on my own saliva. This scares me more than anything because my mother, who also had MS, died from a stroke caused by choking. Now - add to this the sensation of beetles crawling in my scalp and an occasional ice cube sensation in the crotch. Although I love warmth, heat exacerbates my symptoms, so I must hide in air conditioning in the summer. Cold seems to make neurological issues feel better, so I sleep with the window and sliding glass door open unless it's gonna dip below 15 degrees during the night. Baths are pee warm at most.
Although I am on SS Disability, I haven't been on long enough to get Medicare and have no insurance. Money is an issue because I am a widow and SS is just not that much.
All of this garbage is going on inside this very uncomfortable skin and no one sees it from the outside. Sure - I twitch and use a cane, but I look fine. So! I must be a hypochondriac. MRI's and a spinal tap would beg to differ, but they don't know that. Thank God my kids DO understand. My son moved back home from out of state (and away from his girlfriend) to keep me outta trouble. My daughter moved to within fifteen minutes of my home. They are the only ones that matter to me. I have no other outside contacts that aren't online. Just seven years ago I was chasing caribou up a mountain and hiking with grizzly bears in the tundra in Alaska. Now I'm in an invisible world.
Jeesh - That was a SERIOUS vent!!
The vision in my right eye was destroyed by optic neuritis when my MS began. I have frequent partial seizures that just look like quick jerks of my arm, but they ended my fifteen year career as a professional wildlife artist along with the vision problems. The fatigue is debilitating, but I'm not sure how much of that is because of all of the medications that I take or inject daily. Choking is becoming more and more of a problem. I wake up unable to breathe because I've choked on my own saliva. This scares me more than anything because my mother, who also had MS, died from a stroke caused by choking. Now - add to this the sensation of beetles crawling in my scalp and an occasional ice cube sensation in the crotch. Although I love warmth, heat exacerbates my symptoms, so I must hide in air conditioning in the summer. Cold seems to make neurological issues feel better, so I sleep with the window and sliding glass door open unless it's gonna dip below 15 degrees during the night. Baths are pee warm at most.
Although I am on SS Disability, I haven't been on long enough to get Medicare and have no insurance. Money is an issue because I am a widow and SS is just not that much.
All of this garbage is going on inside this very uncomfortable skin and no one sees it from the outside. Sure - I twitch and use a cane, but I look fine. So! I must be a hypochondriac. MRI's and a spinal tap would beg to differ, but they don't know that. Thank God my kids DO understand. My son moved back home from out of state (and away from his girlfriend) to keep me outta trouble. My daughter moved to within fifteen minutes of my home. They are the only ones that matter to me. I have no other outside contacts that aren't online. Just seven years ago I was chasing caribou up a mountain and hiking with grizzly bears in the tundra in Alaska. Now I'm in an invisible world.
Jeesh - That was a SERIOUS vent!!
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