Guest Post: My Mentally Ill Son vs Your son with Another Type of Illness

lauraLaura 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.

About Michelle Clark Bipolar Bandit

I am a strong advocate for the mentally ill and have been since I was first approached by a lawyer in a psychiatric facility as a teenager. He wanted me to help him fight how the mentally ill are mistreated. I was diagnosed with bipolar disorder at the age of 17 after a full blown manic episode. Before that, I suffered from debilitating depression for 4 years. My goals are to help others by sharing my story and providing tips to deal with mania and depression. I often write blogs related to advocating for people like myself. I want to encourage, inspire, and educate those with #bipolar disorder and other mental illnesses and also include inspirational #quotes. I founded the group Advocates for People with Mental Illnesses and the page Mental Health Advocates United and have several social media sites that are related to bipolar disorder and/or advocacy. If you are an advocate or would like to be, I hope you join our FB group: Advocates for People with Mental Illnesses
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12 Responses to Guest Post: My Mentally Ill Son vs Your son with Another Type of Illness

  1. Gloria says:

    Laura this is so true and you made the points that most of us family members have experienced. No one really cares about how the illness affects the caregivers but it is so hard for all of us who struggle to do the best we can. Thanks so much for writing this.

    • I will pass this on to Laura and express her thanks for your encouraging words on her behalf.

      • Mike Garvin says:

        I don’t think it would be a good time to pass on her wishes Mrs Bandit (alias?), but you can pass on my deepest condolences to Mrs Pogliano because 4 days before your reply Zac unexpectedly passed away on Jan 18th. As someone who lives with severe bipolar disorder (my official diagnosis is “excited delirium,” according to the team of psychiatrists who treated me during my last hospitalization, a rather rare form of severe mania) her words touched me and invoked the great injustice in how our society responds to those suffering from severe mental illness. I’m one of the fortunate ones who has finished graduate school and will soon embark on a long career working in mental health/policy/advocacy/govt administration to hopefully remedy exactly the social ills Mrs Pogliano’s eloquent juxtaposition clearly articulates. Please pass on my well wishes during this tragic time for her and her family. Let Zacs memory be everlasting. Once again, please tell her that a total stranger has been so touched by her words. And I can’t begin to imagine what she is going through right now. I’m so sorry…Sincerely. Michael Garvin 😦

  2. Sandra says:

    Thank you for expressing what many of us can’t. We suffer in silence every day and wonder where we’re going to be tomorrow. Thanks you and my prayers are with all who suffer.

  3. julie reese says:

    There is no article I’ve read recently that could explain how horrific a person with a mental illness & their families are treated like the plague, better than your article I have just read~~~thank you for speaking for all of us either with a mental illness or that have a loved one fighting for help and answers…We are definitely a family without so many answers & our son has suffered tremendously as a result of being put at the bottom of the barrel every time we’ve turned around for help ~~ family members & friends alike turn & pretend like there is no problem…I am ready to listen and help if I can…

  4. I just wanted to say that this is one of the most enlightened and best posts I have ever read on this subject. What you say is so so true! I think about the current “Ebola crisis” and all the effort, money and energy being spent on this disease. If only half the effort was spent on trying to find better and safer treatments and cures for mental illnesses we would be so much further down the road! I shared your blog on my page and on my profile. ( Off my profile page your blog has bee shared 25+ times so far! Thanks you so much for writing this! Sincerely, Ray Maternick

  5. Pingback: Guest Post: My Mentally Ill Son vs Your son with Another Type of Illness | Bipolar Bandit | jeremiahletter

  6. Laura, is an amazing mother and love her son a great deal.

    • Gloria says:

      Yes, Laura is an amazing Mom and also an amazing person who was so kind to help a friend of mine who needed a place to stay while her daughter was on an inpatient bipolar unit at Johns Hopkins last year. I was totally amazed at how gracious she was and totally unselfish.

  7. Matt Strelo says:

    Thank you for this incredible and simplistic comparison. My son has ADD and ODD and has been kicked out of school at age 9. My wife quit her job to home school. I got elected to the School Board and have become a vocal advocate for special education reform. I plan to share this article with my fellow Board Members and District Leadership. Thanks again.

  8. Nancy Hopkins says:

    Thank you! Just….thank you!

  9. Excellent points. There is a lot of pain expressed in this post, and when you compare it like this, it’s outrageous.

    There are a number of chronic illnesses that have similar issues as chronic mental illness (e.g., autoimmune conditions, chronic fatigue sydnrome, fibromyalgia, even intellectual disability). If your child gets cancer, you’ve hit the social jackpot. If they get something that —appears—- vague, undefined, or can be blamed on personality defects (by ignorant people) then no one seems to give a shit.

    Wouldn’t it be great to see a huge fundraising campaign to help support a family who has a child with schizophrenia?

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