I have a friend, who like myself, is suffering the effects of having fibromyalgia in a society that doesn't like to face the fact that there are disabled people around them who might need a helping hand. She has applied and been denied disability through Social Security multiple times and has to work in order to support her children and herself and she is getting grief from her co-workers about taking time off when she is ill.
Why is it so difficult for people to understand that when a person feels bad while at work, they are not able to function as well as the other workers. Why is it so difficult for our government agency that is supposed to be helping in these situations to step up to the plate and give these people a little help or let them collect the disability that is there for them? Are we so sure that a majority of people trying to get aid are really able to work and don't need aid, that we are willing to let people who need aid "fall through the cracks" and suffer?
When I talk to this friend, I'm reminded of my own struggle to get help. I had to reapply several times before I finally was able to get disability and then, it was the lowest amount they could award and not enough to support me. I only got awarded, my worker told me, because I had several chronic conditions that aggravated each other, or I would have never been able to get help. Even now, I am scrutinized by the agency continually to make sure I "deserve" to get disability. Every where I go, everything I do, I have to worry if someone is going to decide that I'm not "worthy" or that I'm faking my disability. Even though I know that I need to be parked close to the doors at the supermarket, I have to worry that someone will see me park and get out and walk into the store without a wheelchair or cane and will decide that I'm not disabled (they need to remain around to see me drag myself out, exhausted, after a mere grocery shopping trip to get a load of what I look like when I've used all my reserves on something so mundane). I have people who innocently ask me why I can't work at a business to support my family if I can work from home to do so. I have to patiently explain that most bosses won't allow workers to drop what they are doing and nap mid way through their shift, or spend an hour staring off into space when they should be attending to work. I get asked how I can get laundry done, do dishes, volunteer at something,etc. They feel I need to explain my movements to them.
To the "nay sayers" I say, "Are you a medical profession that knows my history and case? Because if you aren't then why are you second guessing my doctor's advice to use a parking placard, get in a walk every day, try to stay as active as possible, and be on disability?" What do you know about me and my story that you feel I should be ashamed about what I do during my day? What gives you the right to judge someone else? Do you really think that I want this life? That I looked forward to and worked towards having an aching, sore body? That I want to be trying to live my life while sleep deprived and exhausted? Do you think people chose that? I always hear people say, "well...so and so is really just trying to get attention". REALLY?! I have plenty of talents and abilities that can get me positive attention, why would I seek negative attention?
My advice to you, pay attention to the areas of your own life that could use a little work and stop worrying about what I do. When you are around someone with a disability, attempt to use kindness to deal with that person. They can stand to hear something positive and uplifting and not be shamed about something that they often have no control over. Treat them like you, yourself, would care to be treated. Our world can use a little more positive kindness and a little less negative meanness.
That is all, go about your day...
Why is it so difficult for people to understand that when a person feels bad while at work, they are not able to function as well as the other workers. Why is it so difficult for our government agency that is supposed to be helping in these situations to step up to the plate and give these people a little help or let them collect the disability that is there for them? Are we so sure that a majority of people trying to get aid are really able to work and don't need aid, that we are willing to let people who need aid "fall through the cracks" and suffer?
When I talk to this friend, I'm reminded of my own struggle to get help. I had to reapply several times before I finally was able to get disability and then, it was the lowest amount they could award and not enough to support me. I only got awarded, my worker told me, because I had several chronic conditions that aggravated each other, or I would have never been able to get help. Even now, I am scrutinized by the agency continually to make sure I "deserve" to get disability. Every where I go, everything I do, I have to worry if someone is going to decide that I'm not "worthy" or that I'm faking my disability. Even though I know that I need to be parked close to the doors at the supermarket, I have to worry that someone will see me park and get out and walk into the store without a wheelchair or cane and will decide that I'm not disabled (they need to remain around to see me drag myself out, exhausted, after a mere grocery shopping trip to get a load of what I look like when I've used all my reserves on something so mundane). I have people who innocently ask me why I can't work at a business to support my family if I can work from home to do so. I have to patiently explain that most bosses won't allow workers to drop what they are doing and nap mid way through their shift, or spend an hour staring off into space when they should be attending to work. I get asked how I can get laundry done, do dishes, volunteer at something,etc. They feel I need to explain my movements to them.
To the "nay sayers" I say, "Are you a medical profession that knows my history and case? Because if you aren't then why are you second guessing my doctor's advice to use a parking placard, get in a walk every day, try to stay as active as possible, and be on disability?" What do you know about me and my story that you feel I should be ashamed about what I do during my day? What gives you the right to judge someone else? Do you really think that I want this life? That I looked forward to and worked towards having an aching, sore body? That I want to be trying to live my life while sleep deprived and exhausted? Do you think people chose that? I always hear people say, "well...so and so is really just trying to get attention". REALLY?! I have plenty of talents and abilities that can get me positive attention, why would I seek negative attention?
My advice to you, pay attention to the areas of your own life that could use a little work and stop worrying about what I do. When you are around someone with a disability, attempt to use kindness to deal with that person. They can stand to hear something positive and uplifting and not be shamed about something that they often have no control over. Treat them like you, yourself, would care to be treated. Our world can use a little more positive kindness and a little less negative meanness.
That is all, go about your day...
i had lyme disease for 10+yrs before i was given a diagnosis.symptoms continued after treatment,and i was give the secondary diagnosis of fibromyalgia.after diagnosis,i applied for disability and was turned down because because they felt i could still do my previous job as a waitress--i hadn't worked the entire time i was ill,i had been on public assistance after leaving my abusive husband and going into a shelter,which is how i lost my waitress job.i was forced to return to work after public assistance laws changed in my state,and worked for the next almost 10yrs.these years were pure living hell,if you can call that living.when i could no longer perform my job requirements in the factory where i worked,i was let go.i then applied for disability a second time.i was again denied.this time the denial letter quite clearly stated that since i walked without aid and possessed a college degree,i could find a way to support myself besides using my hands.that is a direct quote from the adjudicator of my appeal.i returned to work briefly over the next few years,at a laundromat and a coffee shop.when my grandsons received their autism diagnosis,my daughter and i made the decision that i would quit work and stay at home with the boys,and she would support all of us financially.since then,both of us have had to contend with people posing the rude question "why do you let your mom burden you like that?" people have actually told her that she should make me go back to work to support myself.we have both had to learn to keep our chin up and tell them "it's none of your business." but mentioning autism usually shuts them up right quick.nothing like a kid flapping the hands in the air and screaming to change the subject...
ReplyDeleteLinda, that is exactly what I'm talking about. What makes people think they have the right to judge disabled people like that? I am not a person to wish ill will on other folks, but when I hear them make judgements like that I really wish they were in my shoes for a day or two to help them adjust their attitudes about disabilities.
DeleteHaving been a diesel mechanic for over 25 years, my knees and other joints are in bad shape. I battled for disability for 4 years and lost everything. Arthritis pain is worse than I ever imagined. But to look at me, I look fine. But not inside where I deal with pain daily. So I'm starting over and balancing pain meds with an active life I want to lead. Trying not to over do it [the pain meds] and become addicted is something else to worry about. But on the outside, you can't tell except for a limp. People still glare at me when I pull in a Handicap parking spot because I'm not in a wheel chair. never mind that I have a limited distance to walk. Daily battles make us strong I guess.
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