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mourir sur scene
TheEdgeOfTheAbyss
He is also color-blind. Which doesn't seem like too big of a disability but it causes him a lot of frustration. Partially because he loves art and digital painting but is insecure about colors. He also lost an amazing and very well paying job calibrating and repairing diagnostic tools for oil drills because his boss found out he was color blind. The programs they used for running tests on the tools used color coded graphs and and diagrams and he couldn't see all the programs.
I have a brother who is color blind too. He sells some clothes and gear on ebay so he'll ask us for help when he's not sure how to describe the color of something.

That is awful that your boyfriend lost a job over that. It sounds like they could have reasonably accomodated him by setting up a different color system. Is it too late to file a claim for wrongful termination?

Unfortunately all of the software was set up that way. Also color blindness is not protected under the ADA so if it interferes with your ability to do a job the company can fire you and are not required to try and accommodate it. There are petitions to get that changed, but it's not really a well known issue.

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I have been reading the stories, just sorry for the delay in replies. I wanted to respond to each post. Thank you everyone for posting. Your stories have been very inspiring.

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Laila Izuka
All of my disabilities are invisible.

I've had epilepsy since I was three years old, and I'm 24 now. My epilepsy is well controlled, and I haven't had a seizure since about 2006. It sucks having to take medication all the time for it, especially since it's my most expensive medicine to take. And I also fear driving because I'm afraid of having a seizure while driving, and do not want something bad happening if that happens. I completely black out when I have them sad

I was also recently diagnosed with depression and anxiety, yet, I know that I've been suffering with this for quite a few years now, maybe even longer than that. It's hard to make people understand how I feel, and why. Even though there are times when I cannot explain why I'm suffering so much mentally, which then affects me psychically as well when it gets bad enough.

Also I have a feeling I'm starting to develop carpal tunnel in both of my wrists, and something in my knees as well because of my line of work D: (but I haven't seen a doctor about this yet, I have too much on my plate already to be dealing with this)

Aww, that was the age I got epilepsy too, but it was a childhood one so I grew out of it by the time I was eight. That's great you are doing so well now. I had to take medicine too for mine that stunted my growth so I have 13 year old bones now. Driving would be scary. I guess take a buddy or family member with you. Do you have a service dog? I heard some dogs can warn people before their seizure starts which is interesting. It's ok many people are facing some sort of anxiety or depression issue especially with all the world events going on. Don't feel bad about it. I have faced some emotional issues in the past before and on a supplement to help with stress now. Good luck when you see the doctor.

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This is my first time posting in this forum so here it goes. I'm 26, female, and have been using a wheelchair and crutches since I was 14. I was doing laundry and fell down some stairs. I used to have spasms in my legs for eight hours non-stop until my neurologist that I've had since I was a kid for my childhood epilepsy told me to try Benedryl. So my spasms occur all the time all over my body, but are less severe most of the time. My long list of invisible disabilities are Fibromyalgia, Osteoarthritis, torn ligaments in both ankles, chronic back pain, and muscle spasms. Recently I've had Mono and now an elevated liver. I'm facing a lot of pain lately especially since I got Mono back in October.

My three questions to any other Gaian that has to face an invisible disability are:
How do you cope with the emotional stuff that comes with the physical pain?
Have you had to make adjustments in your lifestyle?
What kind of invisible disability are you facing? (I love reading stories.)



1. There will always be days when I feel good, and there will be days when I want to hide under a rock. I believe that all things happen for a reason, and that good will come out of this. For example, having this disability has made me more compassionate and understanding in a lot of areas. I've learned to not take so many things for granted, that a lot of "normal" people sometimes do. And I've become more thankful for the things that are good in my life.

2. I have had to make many adjustments to my lifestyle... My issue is a digestive disease, so I've had to completley change the way I eat. I have very little energy, so i've learned to work around that, and to prepare myself for pain attacks.

3. I have a digestive disease called Gastroparesis. Meaning my stomach is paralyzed. It is a potentially life-threatening disease where the muscles that empty food from the stomach, into the intestines are fully or partially paralyzed, and food does not move through. Usually it just sits there until it's vomited back up, or causes severe pain, until the stomach FINALLY empties. I can't eat very much, and sometimes a few bites of food will cause me horrible pain. In really bad cases, people will have trouble keeping anything down, so they face malnutrition and flat out starvation. It has only recently been given attention by doctors since it's symptoms are so all over the place, that most of the time it was misdiagnosed as bulimia... (Even though the person with it wasn't forcing themselves to throw up.) Because of this, there are only a few known treatments. There are two medications that are known to help the stomach empty. (one of them is not available in America, and needs to be imported.) Then there are botox injections, where botox is injected into the stomach muscles, and it helps to relax them. Next is a gastric pacemaker that is implanted on the stomach. And then there are feeding tubes for those who can't get adequate nutrition. This disease has killed many people, and continues to kill a lot of people... In a support group of teenagers and young adults that I am a part of, we lose on average about 13 people a year (in that support group alone) A few friends of mine are dying from this disease... I'm thankful that mine is under control at this time, and I have hope in the fact that modern medicine and treatment can only get better as time goes on.

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xChibi Cannibalx
How do you cope with the emotional stuff that comes with the physical pain?
Try to take my mind off the pain. Use heating pads, medicines, ect to dull the physical pain as much as possible, then do something i like. Such as, watch a movie or play a video game

Have you had to make adjustments in your lifestyle?
So many! I have restrictions on walking, laying, sitting, standing, running, how much i can lift, ect. My 'every day life' changed so much after the event. Which sucks on so many levels, but whatever

What kind of invisible disability are you facing? (I love reading stories.)
Ive got a panic disorder, kidneys are bleeding (watching me closely for lupus), over sensorary disorder, over sensativity disorder, i had bad scoliosis which we "fixed" with a 12 level fusion spinal surgery when i was 14 - the surgeon messed up which is why im so limited on my activity now - and probly more i cant even think of. Its wonderful feeling this old when im only 18 emo

Aww hang in there. emotion_hug I tried making this thread just to help people talk about their lives because sometimes it just helps getting it out there. After my accident I wasn't able to run at all and I know I took a lot of things I enjoyed in life for granted. It doesn't matter what age a person is. It's hard to do with health problems at any age. I'm so sorry the surgery wasn't successful for you. I was fourteen when I fell down the stairs and got my back issues to do. It's such a hard age to go through something traumatic. You must have been scared with the surgery, poor thing. What kind of movies and games do you like? I like watching black and white films a lot. I hope you find other fun activities to do too and are able to make some friends by this thread.

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purplekitty
Scobre
Huh that's interesting sun makes you flare up. Usually it's just stress or cold weather for me.
The Darn sun makes me flare up aswell. >< Hola! I have a rare auto-immune disease that only one out of twenty people have in the states. Also I am a rare case because I am one of the few who are in their mid twenties that has this disease. Its Dermatomyositis. Some of it yes, is visible with all the rashes and flares. However there are two types. One that only effects the muscles, joints and skin(SINE). Then the other, which is more severe, affects all of that and causes inflammation in the inner organs. I am lucky to have only SINE. I cant even imagine people who go through the second one. :-/ With all the meds I started taking since last year, all the screw ups my doctor made that caused me to have an allergic reaction to a medication when I was at a Horror convention....well at least I looked the part.

It was annoying at first since most of the doctors I first saw last year were dumbfounded by my rashes and thought it was allergic reaction to soaps,perfumes, foods...yadda yadda...Then I told them about my muscle weakness and they got clueless about that. At least my current ones are well knowledgeable about it.

I have pain mostly in my wrist. Few of my fingers are inflamed and it hurts to do simple things like lift a plate out of the dishwasher, type, turning a door knob, unlocking my door..little things you dont realize that make a big impact on you when you cant do them as easily as you used to. I take pain killers along with my other medication. I am seeking acupuncture now since the pain in my wrist are killing me. D:

Oh wow but at least that statistic makes you unique. I hope you get a cool umbrella to take around. There is even a lot of skin protective clothing now. My mom has had surgery for skin cancer, so she has to be really careful about the sun now. I hope you find some medicine that works for you. It's so tough finding the right medicine for anything. I love acupuncture. It's amazing what needles can do. Like it boost my immune system and I was able to get over my Mono with it. So I hope it helps with your immune system too and the pain.

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kisachupon
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This is my first time posting in this forum so here it goes. I'm 26, female, and have been using a wheelchair and crutches since I was 14. I was doing laundry and fell down some stairs. I used to have spasms in my legs for eight hours non-stop until my neurologist that I've had since I was a kid for my childhood epilepsy told me to try Benedryl. So my spasms occur all the time all over my body, but are less severe most of the time. My long list of invisible disabilities are Fibromyalgia, Osteoarthritis, torn ligaments in both ankles, chronic back pain, and muscle spasms. Recently I've had Mono and now an elevated liver. I'm facing a lot of pain lately especially since I got Mono back in October.

My three questions to any other Gaian that has to face an invisible disability are:
How do you cope with the emotional stuff that comes with the physical pain?
Have you had to make adjustments in your lifestyle?
What kind of invisible disability are you facing? (I love reading stories.)

you know my 2 knees hurt now been 2 days not due to injury or anything so its odd. earlier since i was a child it only aches due to some activities but not like this. i have to rest them now and cant put pressure to it cat_cry
im worried. i cant take painkiller. my mom got OA due to old age but im still young emotion_0A0
my muscles also got cramps easily and fatique, pain.
i dont have a really good health that i wish i have emotion_bandaid

nice to meet everyone here i hope more people could post 3nodding

Have you tried Arnica Montana before? I know it can be lethal if taken through the mouth in high doses, but the cream can be really nice. It seems like it's more common sold in stores now. Yeah I get tired of taking pain killers all the time too so I try to do pain relieve stuff on the skin. Salonpas patches are nice too. So I guess try to do some research and search the stores for some topical pain relief things. OA as in Osteoarthritis? I got diagnosed with that at age 21, so you can never be too young to get it. I hope you find something to help relieve the pain.

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Kupo-Sama
Scobre
This is my first time posting in this forum so here it goes. I'm 26, female, and have been using a wheelchair and crutches since I was 14. I was doing laundry and fell down some stairs. I used to have spasms in my legs for eight hours non-stop until my neurologist that I've had since I was a kid for my childhood epilepsy told me to try Benedryl. So my spasms occur all the time all over my body, but are less severe most of the time. My long list of invisible disabilities are Fibromyalgia, Osteoarthritis, torn ligaments in both ankles, chronic back pain, and muscle spasms. Recently I've had Mono and now an elevated liver. I'm facing a lot of pain lately especially since I got Mono back in October.

My three questions to any other Gaian that has to face an invisible disability are:
How do you cope with the emotional stuff that comes with the physical pain?
Have you had to make adjustments in your lifestyle?
What kind of invisible disability are you facing? (I love reading stories.)


1) I know all too well about it. Personally aside from taking things one day at a time and really coming to terms with the pain, which will take patience and time. Anything you love to do with your life that you can do, I say do it. It helps.

2) For the first while I did, and I'll probably have to make them again. I have to make sure not to over do it, even though 99.9999999999% of people believe I'm just making this up and am making excuses for being weak or lazy. (Hard when you're a guy with disabilities because of the macho culture...) But really know your limits, stick too them and anything that helps along the way do so. Also if you're able to exceed your limits as time progresses with out harmful repercussions, go for it.

3) Well, I'll give you the abbreviated version of my extensive history of disabilities. When I was born I was diagnosed with the ever so burning life long affliction of Acid Reflux disease. But my luck got worse as I had Global Development Syndrome when I was 3 and was at risk of being at the level of autism without treatment. (Got it and am normal in the functioning respect) I also was diagnosed with Tourettes syndrome and had to very patiently wait unbelievable amounts of time to control it under my own will power because no drugs taken for it worked. At the age of 9 I was diagnosed with osteoarthritis, which worked in the hellish conjunction of a lose joint genetic disorder known as Ehlers Danlos Syndrome which effects very few people in North America. (Lucky me huh?) The disorder also interferes with the body's ability to produce a proper amount of energy leaving your immune system lacking thanks to Duncan's syndrome, which means I have the immune system of a 60 year old at age 20. (I'm 27 now) This also tied in with Chronic Fatigue syndrome and Fibromyalgia, causing me to have to take pain killers and anti-depressants at the age of 10 all the way up to age 16 where I decided I didn't want to be dependent on medication that just needed me to get more and more to cope with the daily pain I've lived for a long time now. So the only medication I have is for Acid Reflux, which if untreated causes throat cancer, and just learned to accept my fate and live with daily pain. Oh, also I forgot I have low bone density. All this can be passed on to my offspring and is stuck with me for life. Yup. That's pretty much it in a nut shell.

Wow you have to deal with a lot too. I totally understand the passing to future offspring thing, why I've decided to adopt instead. I'm so worried I'll pass family history of bipolar and epilepsy to them. I love children and I rather just give a couple kids a loving home. I figure I rather gamble with someone else's genes than my own. Even if they will have problems too, I'll love them just as much as if they were my own blood children. I don't know why anti-depressants are used for Fibromyalgia. It didn't help with the pain and all it did was giving me every single bad side effect. I'm on the Shaklee vitamin plan right now and I'm so loving the stress pill with that. It's like just because something is a prescription doesn't mean it will always work with our bodies. I heard some research on Fibromyalgia that it is actually a skin disorder. Like there is something not connecting in the skin that causes the false pain and temperature varieties in the skin. So it will be interesting to see the results of further research on it. I hope you are able to find some methods of pain relieve and low impact exercise. I tend to get sick a lot myself and joke that I almost need a bubble suit. So hang in there and try not to get sick as much as possible. So many germs around now, it's scary.

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Rae x Rae
What kind of invisible disability are you facing? (I love reading stories.)
I've got two: anxiety, and then a joint condition in my knees, though I can't remember the name of it. My anxiety really only became unbearable when I was around 21, and the knee condition started when I was a teenager. I remember that it was causing me a lot of pain to run and stuff in gym class, so I went to the doctor. Next thing I knew I was being dragged in for MRIs, xrays, and physical therapy. I'm not really allowed to run, and I've been told to be very careful doing any kind of climbing, hiking, etc that could put a lot of pressure on. The pain is usually enough to make me cautious anyway but my doctor was really explicit that I could end up in a wheelchair.

Fortunately I've really come a long, long way with learning how to deal with my anxiety. I don't get anxiety attacks anymore, for the most part. I don't have to take my medication ever. I get anxious about certain things that other people don't really get, but I'm mostly okay.

How do you cope with the emotional stuff that comes with the physical pain?
I get bitter sometimes because I wish I could have been like other people my age, but I guess for the most part I try not to let it affect my life. I've found different things I could do for exercise. I really have always wanted to start running though. I'm a little sad that I can't.

Have you had to make adjustments in your lifestyle?
I've gained weight because of not being able to be quite as active, and I have to avoid running or anything that could put too much impact on my joint. Traveling is usually the worst though, since I can't keep my knee bent for a long amount of time. Planes are pretty painful to deal with since I can't get up and move, so I've become really fond of trains.

That stinks you can't run either. The only way I found to get the sensation of running without the pain and falling over for myself was by running in water either in a pool or a lake or a river. Part of the reason why I enjoy playing zOMG! so much because it allows me to virtually run. I have problems with my weight too since my accident. Don't let it get you down and just try your best. Even walking a little each day can help a lot, just take it slow and easy and find a flat area to walk. That's so great you are doing so well with the anxiety. Don't worry if anything learned from this thread is that age doesn't matter. There are many people having to face challenges at an early age. I hope talking here provides an outlet to relate to others.

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Sky Blue Faerie
Defeat autism, why? As I have just said, being autistic isn't all doom and gloom. We need acceptance, not people wanting to change us. Autism has many advantages, plus it affects everything about a person. It's how the brain is wired. How the PERSON is wired. Autism is not a pain in a joint or a bacterium to be eradicated, autism part of who I am. And I like me.

That's a great mind set to have. biggrin If anything facing what are considered disabilities I think builds maturity and character so we have an advantage over other people. Plus I think it makes us more accepting of others. I mean everyone wants to feel accepted regarding so much in life now, so why shouldn't Autism be accepted as well? I love my second cousin and I don't care if he has Autism. He is a really neat person and really sweet. Kids can be cruel in school and sadly it doesn't change in the corporate environment. Thanks for posting.

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TheEdgeOfTheAbyss
My boyfriend has Ehlers-Danlos. It's a condition that effects the connective tissue in the body. It's famous for making people incredibly flexible (most old side-show contortionists had it) and giving them very stretchy skin. Truth is though it's a very painful and injuring disorder. He regularly accidentally dislocates his joints doing normal activities, and has days where everything just hurts for no reason. It also affects the stability of his organs. It prevents his intestines from functioning normally, because they overstretch and things don't move through properly. Years of accidentally over-stretching his lungs caused a weak point that spontaneously burst, so he was in the hospital for a collapsed lung. Eventually he will have to have surgeries to help stabilize his joints as his tendons tear or stretch too much. It has given him a pretty strong pain tolerance, so that the normal pain, and small dislocations don't affect his life too much.

He is also color-blind. Which doesn't seem like too big of a disability but it causes him a lot of frustration. Partially because he loves art and digital painting but is insecure about colors. He also lost an amazing and very well paying job calibrating and repairing diagnostic tools for oil drills because his boss found out he was color blind. The programs they used for running tests on the tools used color coded graphs and and diagrams and he couldn't see all the programs.

I never heard of that before. It sounds interesting. I hope the surgeries go well when the time comes. He got fired because he was color blind? Wow that is messed up. Can't he report his boss for that? I hope your boyfriend finds a job with a better boss. I mean couldn't they used different shades of grey to help him out with that?

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Ok caught up in the thread. Thank you for the patience. As of today I'm on medical insurance finally again after fighting months to get covered. So tomorrow I can see what is wrong with the new health issues I've been facing.

Timid Bookworm

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When I was 16 I was diagnosed with Mixed Connective Tissue Disease, meaning I showed symptoms of Juvenile Rheumatoid Arthritis as well as Lupus. It was incredibly difficult because I was in high school and had to cope not only with severe physical pain, but with peers who were...less than understanding. There were people who thought I was making it up for attention and people who stopped associating with me because they thought they could catch the disease from being around me. It took an emotional as well as a physical toll.

I found that educating others and throwing myself into advocacy and awareness initiatives was the best way to cope. I began organizing teams for the yearly Arthritis Walk, talking to my friends and family about the statistics surrounding JRA, and went through the Arthritis Foundation to lobby Congress for more research funding and access to healthcare for kids with conditions like this. It helped to feel that I was doing something meaningful at a time when physically, I could do very little.

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Scobre
Kupo-Sama
Scobre
This is my first time posting in this forum so here it goes. I'm 26, female, and have been using a wheelchair and crutches since I was 14. I was doing laundry and fell down some stairs. I used to have spasms in my legs for eight hours non-stop until my neurologist that I've had since I was a kid for my childhood epilepsy told me to try Benedryl. So my spasms occur all the time all over my body, but are less severe most of the time. My long list of invisible disabilities are Fibromyalgia, Osteoarthritis, torn ligaments in both ankles, chronic back pain, and muscle spasms. Recently I've had Mono and now an elevated liver. I'm facing a lot of pain lately especially since I got Mono back in October.

My three questions to any other Gaian that has to face an invisible disability are:
How do you cope with the emotional stuff that comes with the physical pain?
Have you had to make adjustments in your lifestyle?
What kind of invisible disability are you facing? (I love reading stories.)


1) I know all too well about it. Personally aside from taking things one day at a time and really coming to terms with the pain, which will take patience and time. Anything you love to do with your life that you can do, I say do it. It helps.

2) For the first while I did, and I'll probably have to make them again. I have to make sure not to over do it, even though 99.9999999999% of people believe I'm just making this up and am making excuses for being weak or lazy. (Hard when you're a guy with disabilities because of the macho culture...) But really know your limits, stick too them and anything that helps along the way do so. Also if you're able to exceed your limits as time progresses with out harmful repercussions, go for it.

3) Well, I'll give you the abbreviated version of my extensive history of disabilities. When I was born I was diagnosed with the ever so burning life long affliction of Acid Reflux disease. But my luck got worse as I had Global Development Syndrome when I was 3 and was at risk of being at the level of autism without treatment. (Got it and am normal in the functioning respect) I also was diagnosed with Tourettes syndrome and had to very patiently wait unbelievable amounts of time to control it under my own will power because no drugs taken for it worked. At the age of 9 I was diagnosed with osteoarthritis, which worked in the hellish conjunction of a lose joint genetic disorder known as Ehlers Danlos Syndrome which effects very few people in North America. (Lucky me huh?) The disorder also interferes with the body's ability to produce a proper amount of energy leaving your immune system lacking thanks to Duncan's syndrome, which means I have the immune system of a 60 year old at age 20. (I'm 27 now) This also tied in with Chronic Fatigue syndrome and Fibromyalgia, causing me to have to take pain killers and anti-depressants at the age of 10 all the way up to age 16 where I decided I didn't want to be dependent on medication that just needed me to get more and more to cope with the daily pain I've lived for a long time now. So the only medication I have is for Acid Reflux, which if untreated causes throat cancer, and just learned to accept my fate and live with daily pain. Oh, also I forgot I have low bone density. All this can be passed on to my offspring and is stuck with me for life. Yup. That's pretty much it in a nut shell.

Wow you have to deal with a lot too. I totally understand the passing to future offspring thing, why I've decided to adopt instead. I'm so worried I'll pass family history of bipolar and epilepsy to them. I love children and I rather just give a couple kids a loving home. I figure I rather gamble with someone else's genes than my own. Even if they will have problems too, I'll love them just as much as if they were my own blood children. I don't know why anti-depressants are used for Fibromyalgia. It didn't help with the pain and all it did was giving me every single bad side effect. I'm on the Shaklee vitamin plan right now and I'm so loving the stress pill with that. It's like just because something is a prescription doesn't mean it will always work with our bodies. I heard some research on Fibromyalgia that it is actually a skin disorder. Like there is something not connecting in the skin that causes the false pain and temperature varieties in the skin. So it will be interesting to see the results of further research on it. I hope you are able to find some methods of pain relieve and low impact exercise. I tend to get sick a lot myself and joke that I almost need a bubble suit. So hang in there and try not to get sick as much as possible. So many germs around now, it's scary.
I so agree with the bubble suit. I used to joke I should be a bubble boy just like in the real world. lol Thankfully though I'm not that allergic to the outside microbes. And the curious thing about EDS is that it actually starts in the skin. Muscles and skin tissue don't form and connect as properly as they should. So that's an interesting link to mention with Fibromyalgia. Probably something the genetisist that diagnosed me said. I wish you all the luck with your adoptions! That is actually a good plan. Although I had a brother who never got any of my family's disabilities. He was 100% healthy. And with the knowledge of what I had to do to get better when I found out about mine, and that it isn't as bad in the next generation, I'm gonna take my chances on the blood. So wish me luck too. My life wasn't hell completely, my mom made mine and my brothers lives comfy and happy. I just wish to do the same for my own.

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TheEdgeOfTheAbyss
My boyfriend has Ehlers-Danlos. It's a condition that effects the connective tissue in the body. It's famous for making people incredibly flexible (most old side-show contortionists had it) and giving them very stretchy skin. Truth is though it's a very painful and injuring disorder. He regularly accidentally dislocates his joints doing normal activities, and has days where everything just hurts for no reason. It also affects the stability of his organs. It prevents his intestines from functioning normally, because they overstretch and things don't move through properly. Years of accidentally over-stretching his lungs caused a weak point that spontaneously burst, so he was in the hospital for a collapsed lung. Eventually he will have to have surgeries to help stabilize his joints as his tendons tear or stretch too much. It has given him a pretty strong pain tolerance, so that the normal pain, and small dislocations don't affect his life too much.

He is also color-blind. Which doesn't seem like too big of a disability but it causes him a lot of frustration. Partially because he loves art and digital painting but is insecure about colors. He also lost an amazing and very well paying job calibrating and repairing diagnostic tools for oil drills because his boss found out he was color blind. The programs they used for running tests on the tools used color coded graphs and and diagrams and he couldn't see all the programs.

I never heard of that before. It sounds interesting. I hope the surgeries go well when the time comes. He got fired because he was color blind? Wow that is messed up. Can't he report his boss for that? I hope your boyfriend finds a job with a better boss. I mean couldn't they used different shades of grey to help him out with that?

Since color blindness isn't included in any of the anti-disability discrimination laws, there is nothing illegal about them firing him. There is literally nothing to report. And for them it wasn't worth re-doing all the programs they had already memorized when they could just find and train someone else.
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