Monday, April 15, 2013

My Mentally Ill Son versus Your Son With Another Type of Illness

Laura Pogliano, a mother and advocate in Maryland wrote on the difference between her experience of having a child with serious mental illness and your experience having a child with another type of illness:

Your child's illness gets 500, 000 likes on Facebook when you post a picture or ask for prayers
My child's illness gets about 5, from people who already know us and know of our struggle

Your child's illness gets copious amounts of tax dollars to fund more research for cures; your child's illness has a congressionally approved budget
My child's illness gets funds cut by 25-40% due to the sequester, or whenever social services are on the chopping block, which is nearly every single time a budget is passed

Your child's illness gets the sympathy of complete strangers, world wide
My child's illness gets labeled by people in the press every day: pscyho, headcase, lunatic, maniac, nutjob, monster, freeloader

Your child's illness gets insurance coverage so he can actually get well
My child's illness gets 30 days coverage per year, with an average inpatient stay of 11 days, with no social workers, therapists, or psychiatric coverage

Your child gets after care support, medically, socially, economically
My child's illness is left to the charity of dot.orgs, with programs we don't qualify for due to income or non-compliance with medication

Your child's illness gets treated in the ER, and quickly
My child's illness gets ignored in the ER for an average of 24 to 30 hours before he's seen.

Your child's illness has specialists trained in care, both inpatient, and afterward
My child's illness has policemen to handle it, who know nothing thing about appropriate care

Your child gets a diagnosis through medical means and exhaustive testing
My child's illness is diagnosed through symptomology, depending what he does that day in front of a doctor, and gets readiagnosed multiple times

Your child's illness has a typically standardized treatment plan and medical path forward to health, even with rare conditions
My child's illness is a quagmire of trial and error with medicine until you hit a combo that works: average is 10 different medications over 3 to 5 years

Your child's illness, unless terminal, is aggressively treated due to a high expectation of recovery and health
My child's illness has an overall low expectation for recovery and he's relegated to a back ward and warehoused, if there's even a spot available

Your child's illness gets everything that can possibly be done medically to alleviate symptoms or put the disease into remission
My child's stabilization period is 10 years. TEN.

Your child's illness gets fundraisers that people gladly attend and give to, generously
My child's illness bankrupts almost every family, with self-pay services, and no fund raisers

Your child's illness has medical records that are robust and shared with cooperating and follow-on hospitals and doctors
My child's illness has medical records caregivers are banned from seeing, which never follow the child to the next medical facility or ER

Your child's illness is a medical tragedy
My child's illness is a "social problem"

Your child's illness is treated in hospitals, with the full attention of caring staff
My child's illness is treated in JAIL, in solitary confinement, often without medicine

Your child's illness is a family heartbreak story
My child's illness requires a standard of dangerousness be met before anyone is allowed to intervene, and when he does meet the standard, it's often too late

Your child's illness is never a legal dispute or legal issue: it's scientifically and medically verified
My child's illness requires laws be passed, that are then not funded or implemented, just to get him to life-saving measures

Your child's illness is acknowledged as a medical condition
My child's illness is a labeled bad behavior and parents get the blame

Your child's illness is considered a medical disability on its face
My child's illness requires lawyers to apply for disability, with an average number of applications: 9

Your child's illness, when very active or critical, is immediately treated as an emergency and forwarded to a specialist for follow on care
My child's illness, when very active or critical, gets him, at best, a 72 hour hold, then he's released to the streets with a recommendation for follow on treatment and no medicine

Your child's illness is afforded the cooperation of caregivers and parents to attend to it
My child's illness is left to the Right to Refuse Care Laws, leaving him to get as sick as he can possibly be, and choose suicide, death, starvation, continued illness with severe brain damage

Your child is never arrested or jailed because he's sick
My child is almost always arrested at some point

Your child's illness is comforted by those who love him, and you
My child's illness means friends drop us, family turns away, and jobs are lost

Your child's illness indicates the need for family involvement and care
My child's illness indicates the need for family involvement, but we're excluded unless he signs waivers, which he often too sick to do

Your child's illness, if you did not treat it, would mean a criminal charge against you for neglect and child welfare agencies would remove him from your care
My child can't be brought to treatment unless he chooses it, when he's incapacitated cognitively, and he can die at the hand of policemen, be shot at, hang himself or kill someone else.

Your child's illness means he's helpless and needs attention, and he gets it
My child is expected to pick himself up by his bootstraps and Try Harder

Your child can have any bed in any hospital in the country, across the board
My child can ONLY have a psychiatric bed, and there's an estimated deficit of 100, 000 beds in this country, and the wait for one can take 6 months or longer in some places

It's encouraged to ask about your child's illness and progress and sympathize with your plight and ask what help they can offer
No one ever asks about mine, and when they do, I get low-brow, upsetting questions like: How many personalities does he have? Do you let him have a gun?

Your child can tell people he's sick. 
My child cannot, or he won't get a job, or a date, or an apartment. 

Your child can get a fun trip sponsored by an organization that assists sick children.
My child can't go on any trips, usually, and neither can his family...

Your child is not homeless. Your child is not incarcerated for years. Your child is not maligned in general by society. Your child's illness is not romanticized or mythologized with ideas like "Madness is Genius." Your child is not part of the Gun Control debate. Your child is not automatically part of the legal system. Your child does not have a Preventable Tragedies national database. Your child is not a throwaway. Mine is all of these things.

Your child got sick through no fault of his own. So did mine.