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View Diary: Disability Blankets for the Thumb-Sucking Masses? (29 comments)

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  •  The other side of the story (12+ / 0-)

    I don't know if my daughter will ever be able to work and earn an "earned" benefit.   I hope and pray that she does, and so does she.   We are working towards it, and planning towards it.   Her dearest wish is to have a "normal" life.   If no progress is made on her illness, I expect that she will become unable to work at some point in her life, even if she starts out able to work.   Most other people with her disease do.   Her grandmother was completely disabled in her twenties from this disease.  My daughter, young and strong, is already  unable to attend on-site school, and has horrible flares after long periods of on-site testing.  Many others with this illness report being unable to work in early adulthood.  

    She has a lot of symptoms, and 'pain' is only one of the many disabling ones.   There are others.  Like fainting.  Clumsiness and frequent falls.  Dizziness.  Flu-like symptoms.  She has trouble maintaining her body temperature, and when she has a flare, she often has a low temperature, instead of a high one.  I always know when her temperature is low, because you can look at her, and she looks like death warmed over.   And, there are days when her brain goes on the fritz.  She can't remember what you said a few minutes ago.  And, when her sensory sensitivities are so severe that she cannot even read.  And, that is a difficult time, because reading is one of her great comforts.  It's also sort of taken for granted on many or most jobs.  She is so very sensitive to her environment, to heat, cold, bright lights, breezes, textures, and the slightest touch can cause great pain that lasts and lasts, particularly during flares.  She wears shorts in winter, because the fabric of pants hurts her skin.   A day out usually requires several days of rest to recover.    

    She really doesn't complain of her pain, anymore.   She has it all the time, and she has to go on with her life.  I don't have to ask her if it hurts.   It always hurts.   It's just that some days, it hurts worse than others.

    Many people with this disease get accused of being malingerers.    As young as she is, she gets that all the time.   Even from professionals who should know better.

    Still, she is thrilled to earn some money helping the neighbor prepare for her daughter to move in, and dreams of the day she can have a job at the local snow cone stand.

    Maybe we should ask ourselves what are the real physical effects of being overweight, uneducated and from broken homes.   There might be mental deficits from being raised in an environment that does not provide appropriate stimulation and opportunities to learn.  Obesity can imply underlying physical illness or inherited disease.   More and more research is pointing to underlying physical causes for obesity.   Being uneducated can impose tremendous obstacles to working.  There are subtle forms of discrimination that can prevent people from getting work, such as discriminating based on accents or dialects when they call about the job, or their address on the application, or the type of name that they have.  There are anxiety and depressive disorders that create huge obstacles for people who have never worked to find work.  And, there is a feedback loop that not working can worsen these conditions.    And, being raised in a "broken home" can imply inherited mental illnesses, or traumatic experiences that can result in post traumatic stress disorder, and dysfunctional parenting that can leave kids without the life skills to find and keep a job.   And, many illnesses are not apparent.   People with bipolar disorder, borderline personality disorder, and many other illnesses don't appear to be ill, and illnesses like my daughter has.   But, they can be tremendously disabling all the same.

    There are some tremendous leaps to assumptions in this "research".  Yes, the populations on these programs are different.  Yet, I have many, many questions, before I draw conclusions.

    By the way, my daughter has not seen a doctor for a while.   There are no effective treatments for her condition.  We spent years trying all of them.  And, now, we have to live with our situation.   If something new comes out, we might try it, but right now, they don't really know what is causing the disease, and while they do know something about what's going on in the body, they have no effective treatments for it.  Just ineffective ones that make you feel sicker.   And, that's not uncommon.  The medical community tries to pretend they have an answer to every problem, but real people who struggle with real problems quickly discover that doctors are not miracle workers, and they cannot wave a magic wand and make these problems go away.

    Yes, I am sure there are malingerers.  And, there are people like my daughter, who is not a malingerer, and who may have no choice.   Please keep her in mind when you make your judgments.   Believe me, I have worked my ass off paying into this system, and my daughter can have my share.

    PS: given the state of our medical system, it does not surprise me that poor and uneducated people who have never had a job have not seen a doctor for their conditions.   What would they pay them with?   Although, it sounds like complete BS, because disability applications require medical records.  

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