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Challenges I Faced Navigating the Mental Health Care System

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I have come up against many challenges or road blocks in my experiences navigating the mental health care system. In this video, I share where I encountered these road blocks, and identify potential areas for change.

For more details on my story, check out these videos:
‘My Story | Living with Schizophrenia’ – https://youtu.be/43BpioYNmY0
‘How Schizophrenia Starts – My Experience with the Prodromal Phase’ – https://youtu.be/irLkbmiW0vo
‘My Experience with Forced Medication’ – https://youtu.be/vejAlrkRue8
‘What a Psychiatric Hospital is Like’ – https://youtu.be/4Mww7mFqyVA

Timestamps:
00:00 Introduction
00:30 My privilege
02:37 Lack of awareness
03:26 No follow up from family doctor
04:03 Lack of social supports / social determinants of mental health
04:55 Focus on crisis intervention
05:52 Trauma from hospitalizations
06:37 Tunnel visioned focus on medications
07:44 Stigma within mental health care system
09:03 Access to care
10:30 Lack of discharge planning
11:09 Care system forgets about me during periods of stability
11:50 Addressing anosognosia
13:35 Misdiagnoses
14:28 Relying on individual competency
15:47 Lack of patient centered care
16:30 Distrust of medical system
17:15 Power imbalance between care providers and patients

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Make an impact! Help support us creating videos on schizophrenia and mental health. Become a donor today! You also gain access to our online peer support community!
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HEALTH STORYLINES: AN APP FOR MENTAL HEALTH TRACKING
Need help keeping track of your medication and your symptoms? Not sure how to talk about what you’re going through with your care team? Check out the FREE app from our sponsor Health Storylines. They’ve developed an app that will help you keep track of your meds, your symptoms, and much more. You’ll be better prepared to communicate with your care team, and you’ll gain insight into how to better manage your mental health.
https://healthstorylines.page.link/SZCLanding

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#schizophrenia #schizoaffective #schizoaffectivedisorder #mentalhealth #mentalillness #challenges

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Disclaimer: This content including advice provides generic information only. It is in no way a substitute for a qualified medical opinion. Always consult a specialist or your own doctor for more information.

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39 Comments

  1. Lauren, you voice the many concerns and trials of all of the folks of all ages who have mental disorders. Our 48 year old son has had issues since he was a teenager and we hi loving parents have tried to help him all along the way. He has ended up in a locked ward in a nursing home and will not talk to us. We spent thousands on a lawyers getting legal guardianship of him in order to at least be told [by law] how he is doing. He is drugged and sat in the corner mainly. So sad this fine young man who has never done anything wrong has never had a chance to have a real life. All we can say is at least he is safe where he is. Better than freezing and starving to death on the street.

  2. It’s similar with chronic and complex physical health issues. Am waiting for ASD testing as an adult. Great on acknowledging your privileges. Being a white cis male grants me more access and ease to my countries health system.

  3. I'd love just a second to speak with you if it's possible! I'm really struggling finding support for my sons father. He's been in and out of facilities for years and on and off of drugs. He's been off of drugs for a long time now but has had absolutely no progress or proper support and I'm afraid Ill either lose him to suicide or never see him start to come back to himself again

  4. i recently did a mental health first aid training and one part i really liked was they didn’t focus just on crisis situations. they had us practice active listening and recognizing early warning signs and then worsening symptoms so that we can help before it gets deadly, and i really thought that’s a great way to look at things

  5. She should move to Wales brand new mental health hospital in Penarth Wales UK NHS offer free health care service is the best in the world

  6. You are so right about the system only caring if you’re actively suicidal. Cynically I could say it’s so they can keep billing you. But it’s probably that they are normally very conservative with your treatment until something happens that forces them to change.

  7. I’m 32, and I survived cancer, but now I sometimes wish I was dead. Once you’re not actively dying anymore, the care and support is over. It’s “back to work” for the 32 year old man. Never mind the permanent chronic issues I now have to live with. TLDR: I sympathize immensely with feeling ejected from the system once you’re deemed “good to go”.

  8. You are seriously telling the truth about what goings on with patients and the mental health system. We love you sis

  9. I relate with you. When I was 14 I was diagnosed with depression. But as my symptoms progressed through years I was finally diagnosed with schizophrenia. Still my medications shuffle to help me. I still never feel stable. Therapy is very expensive here.

  10. I'm in a fluctuating level of psychosis that is gradually worsening. The waitlist to see a mental health worker or psychiatrist has been 6 months long so far, and I'm considered an urgent case. The delusions are distressing and have caused my regular life to be severely disrupted. I'm scared they're going to cause me to die.
    But I'm not a direct harm to myself or anyone else. A slow death is easier for them to ignore, I guess. My hope is gone. I don't recognize Ontario's system anymore.

  11. We need to study more the layers of the brain, alpha, beta, gama, to theta? The lower, the more subconcious?

  12. I am 39 years old. I was diagnosed at 25 during my senior year of college. I just found out I have lyme's disease after I had a tick born illness blood test done. I also tested positive for 3 other tick born illnesses. The first day I saw a psychiatrist I was given a sample bottle of a psychotropic drug after meeting less than 10 minutes without being diagnosed. I was hospitalized after taking the second dosage. I saw told I was bipolar the second visit. I lack the fundamentals listed in the DSM for every diagnoses I have been given. The drugs I was given compromised my immune system causing my white blood cell count to be low while Lyme's was present for 15 years. I realize people have serious problems and that everyone is different. I just want everyone to get the best and most thorough treatment for their individual case. I would like to encourage everyone to assess themselves and ask their medical health professionals about illnesses that can affect the mind like Toxoplasma gondii, rocky mountain spotted fever, and lymes disease. If you are taking care of someone who has to take medication please be nice and encouraging. I was told I was in denial a lot when I ended up being misdiagnosed. I hope everyone the best in their search for recovery.

    .

  13. My sister is schizophrenic. This last year has been terrible. She keeps committing crimes like assault or destruction of property and the courts just keep dismissing the charges because shes Not mentally sound right now. She broke all the windows in my moms kitchen by throwing a chair. The police keep telling my mom that eventually she will get a judge who will force her to get treatment. Thats all she can do. My sister is almost 40. Has a 12 year old daughter who was diagnosed with PTSD just from living with my sister. I had to move out of her house because she was always screaming at the kid. But CPS wont do anything because in that state there has to be physical neglect for them to do anything. My sister wont give my mom custody and she refuses to let my mom talk to her doctors. Its a fucking nightmare. I have my own problems- I'm bipolar. What a family tree eh.

  14. You’re the first middle class schizophrenic I’ve seen on YouTube. At my ward I’m always the only middle class appearing, educated woman in the wards, I am always mistaken for staff because I dress well.

  15. totally unrelated to the incredible well thought out content of this video but GOD I LOOOOOOVE how you always match your outfits to your set it makes my brain go ✨✨✨✨✨✨✨✨

  16. I know how you feel. I can relate 99.99% because I'm currently having the same issues with the healthcare system here in Québec. 🤔😒🙄🤨👎🏻😠🖕🏻 Fuck the Québec healthcare system!

  17. This is almost parallel to the struggle we are currently experiencing getting help for my schizophrenic son. Also living in Ontario. Our system sucks.

  18. Thanks for this channel! I’ve watched many of your videos and they are very helpful. One of my sons lives with a mental illness and after over a year of experiencing psychosis – hallucinations, voices, etc, he is stable on meds (with side affects mind you buts another story) but no therapy! He gets monthly injections but that’s it. He’s an adult so as much as we do it is still his choice not to seek further help. I guess that’s the “catch 22” … we can’t make him talk to anyone but why can’t the system/doctors make it mandatory to see a psychiatrist AND take the meds? Hmmm …

  19. My First case with Mental problems was when I was in the 1999-2000 School year at Garinger High School here in Charlotte; N.C. United States; I was paying attention at the teacher in My class in 9th grade and then My head dropped down to the desk all of a sudden when I was sitting in the classroom and then I didn't feel nothing in My brain for several minutes and then I woke up afterwards from the desk and before I knew it I had to go to the next class; At that time had to take Me out because He knew something is going on with Me Mentally; After that when I was in Quito; Ecuador with My Father's Family; After that I was with My Father's former friend and her sister used to work as a Psychologist and She noticed something is going on with Me Mentally; After that I saw with My Father at that time a Psychiatrist Dr. Cruz on April 18th 2001; After that I was falling into deep depression and I saw Dr. Manejwala at that time in March of 2002 and I was put in a Mental Health hospital for two weeks I was with My weight at 94lbs because the food tasted bad to Me; The room I was in looked like there was a bed and a closet no electronics there in that room at that time; I was seeing My Father in the guest area in the hospital there were TV's at that time; After that I was discharged from the Mental Health hospital; After that I was take My medicine with the right brand and I was feeling good Mentally but Now it says Psychosis so I think they are misdiagnosing Me so I decided to stop take taking the Medicine.

  20. Extremely well spoken. Could easily be a college prof or any type of professional speaker.
    Much more real and watchable than any Ted Talk I've seen

  21. I had 2 and a 1/2 years of no voices. I think you have to truly forgive yourself and your voices in order to receive true clarity. Now I'm hearing voices. I think its cause I hate them. I gotta find forgiveness again

  22. Lauren is not only a smart and beautiful woman. Her voice is wonderful, pleasant and full of emotion, I think she could do voiceovers if she chose to.

  23. I thought Canada is socialized medicine. The "ideal" of some political leanings. Sounds like Americans can access care easier than Canada. $20 copay for counseling. $20-$40 for psychatrist. Free if on medicaid, which is common for more serious mental illness that prevents people from working. It's still a band-aid approach of western medicine. Unfortunately while depression and anxiety are more acceptable. ADHD still has a stigma. It's so hard to get medication without being treated like a drug addict, being undermedicated, or over medicated. Psychiatrists have standard 15m appts but you can ask for a 30m appt, which I did when I first started.

  24. What an inspiration to see someone using their mental health story to help others. This whole channel is a testament to how you can turn your worst experiences into your biggest life purpose and what brings you fulfillment and meaning. Thank you for what you do!

  25. Please please please can you do a video describing the diferences in drug psychosis and schizoaffective psychosis?

  26. Thanks for posting this. Psychiatry is quite unique in that it not only is the only “medical specialty” where otherwise competent adults are treated against their will — it’s also the only profession where the social and environmental determinants of health are almost entirely ignored. There are very few diseases where genes alone influence the development of disease, irrespective of the environment. In almost all instances, the onset and severity of illnesses with a strong genetic risk can be offset by environmental and lifestyle modifications.

    But hey, throwing pills at problems is certainly easier and cheaper than addressing complex, systemic socioeconomic problems that would require uncomfortable conversations and yet still more uncomfortable public policy changes! Unfortunately, psychiatrists remain very close to their historical functions of being “madhouse keepers” — who were tasked with locking away and “managing” various “social undesirables” and keeping polite society free from the eyesores and inconveniences that the “crazies” presented.

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