Challenges I Faced Navigating the Mental Health Care System
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- Опубликовано: 8 май 2024
- 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' - • My Story | Living with...
'How Schizophrenia Starts - My Experience with the Prodromal Phase' - • How Schizophrenia Star...
'My Experience with Forced Medication' - • My Experience with For...
'What a Psychiatric Hospital is Like' - • What a Psychiatric Hos...
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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#schizophrenia #schizoaffective #schizoaffectivedisorder #mentalhealth #mentalillness #challenges
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The first facility I went in at 15 I was told to say something with I was hallucinating. So I told them whenever I did which was alot, and had a male nurse say that the only way I had to have all these hallucinates was I had to have done alot of drugs. I am a half Mexican and was from a lower class. They diagnosed me with bipolar/psychosis. I was diagnosed at 18 with schizophrenia, I was never educated on my illness by my doctor or my parents, just told to cope. Your channel has educated more then any of my doctors, and helps me so much. Not only understand myself but feel not alone. Lucky I seem to final have better doctors. I am grateful for all my supports in my life as well as your video. ♡
I had the "pretty white girl" privelage but almost all this is very relatable. I got the right diagnosis at first (age 13), was never educated, new doctor/new diagnosis. So many pills and so much time spent alone in every way. Realized I'm treatment resitant so now I'm taking a naturalist approach. Im approaching my 30's now and its much different than it used to be. The negative symptoms have become quite challanging in my 20's and I live in a place with minimal mental health resources.
@@enoch4499 I understand that, I had a bad office that cycled psychiatrists. Every few months a new one. So they were always throwing be on new meds. In all that time not once did they think to put me on anti-chaotic. I was constantly in and out of psychosis and blackouts. Now that I am in a calmer place I'm finally not losing chunks of time. I live very simplistic and yeah it does help so much.
Praying for u dear.
Better doctors is the key to a trusted treatment plan
Fuerza hermano
When I had breast cancer, my family and I had an overwhelming amount of support. There were people to talk to the insurance, 24/7 on call support, make meals, social support, help with bills if needed, etc, etc, etc. We need something like that for mental health.
And Neuro Lyme disease
Perfect timing for me as well. We had to take our 17-year-old son to the ER yesterday. It was frustrating and disheartening. Glad to know we're not alone. Thank you, Lauren.
Hang in there, mom.
Thanks. You hang in there, too, Mom.
Oh goodness. Hang in there!! Glad he has supportive parents. As I too have mental disorders I’m scared to death my son or daughter is going to develop what I have. Stay positive mama
I just love how you talk so openly. Ive had a mental health condition most of my life which started when I was at high-school. I experienced Paranoia and Unfortunately I was filled with shame and kept it to myself. I always thought there was something I was doing wrong or not doing. It was 90's no youtube and people just didn't talk about mental heath and feelings.I wish I'd of had something like this. I think what you do is wonderful, this needs talking about just as much as any physical condition and you are extraordinary. Keep it up!
Thank you, Lauren. I fully agree as someone with schizophrenia. Thank you for being a representative for us. You are able to speak in a holistic, humble, and helpful way.
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
This couldn't come at a better time. I've had almost 50 hospitalizations of my own. My psychosis happens partially in response to stress.
All 5 of my kids have mental health diagnoses and I can't get them proper help. They've had 11 trips to the ER so far this year. I even went to the ER with one last night because his partial told me to take him, and they discharged him without him even seeing the doctor with severe mood swings, suicidal wishes (he's 8), and violent outbursts. Didn't even see a doctor. The other doctor we begged to do his evaluation without a 6 month wait is not seeing the ASD that every single other professional has reported because "his IQ is too high", so now he is being misdiagnosed and whatever school placement is recommended is likely to be flawed. Meaning it is going to fall apart and we will back to square one- and this will be back on my lap.
One of my other kids is in the hospital right now- and is supposed to be heading to residential (which would give her a break from the toxic environment in her father's house and her brother's issues in my house). Her dad- who has NPD and who refused to take her to the hospital last week because he claimed he had too much important work to do- is being allowed to sabotage her transfer to residential even though he has directly caused a lot of the problems by standing in the way of her care every step of the way. Even so far as forbidding her previous partial program to give her a therapeutic dose of medication.
And who is going to be blamed when I fall into psychosis again? Me. It'll all be my refusal to take meds (even though I've had a bad reaction to at least 30 meds and they are unsafe for me). I'll have CPS called on me for daring to have a mental illness in the first place. Again. When I'm the only one fighting for these kids.
It is nice to know I'm not the only person who has struggled with getting care, being taken seriously, and HELPED. I'm sorry anyone else has struggled, but since I'm dealing with lots of teams who are acting like I have Munchausen by proxy for daring to push for my kids to get the proper level of help, it helps my sanity right now to know I'm doing the right thing and it is the system that is broken.
I am so sorry to hear about that. I have ASD and wasn't diagnosed until I was 19. Partially it was also because I was gifted and doing well in school, so no one thought there was a problem. When I went to my local regional center to try to get funding for adults with autism programs, they just gave me intelligence testing and then determined I wasn't autistic because I didn't score as "disabled" on the IQ tests. It's really frustrating. I'm not claiming to be as disadvantaged as you but I understand how flawed the system is.
@@matthewcrome5835 I'm sorry you had to wait that long for a diagnosis. It must have been very painful. ❤️
I’m so glad you are talking about this, thank you. After waiting 5 months for my ADHD evaluation they canceled it the day off because of insurance issues..
I don't have a schizophrenia spectrum illness, but I can relate to so much of what you say in this video, especially the part about not being given resources to follow up care after the hospital. It can feel like you are left to your own devices, with no linkage to care or anything besides call this number in a crisis.
The power dynamic issue is huge! I often notice doctors attempting to gaslight their patients, neglecting what we have to say about our own experience!
Yes! I actually had a doctor say he was going to discharge me immediately and then go directly to sign a 10 day extension. When I asked him what he was thinking by those actions, he accused me of hallucinating. I only have visual and tactile hallucinations- never auditory- but who are they going to believe? I wouldn't meet with him without having a witness on speakerphone after that.
@@Twinkie989 oh my God. This is so abusive on the psychiatrists part. Im so sorry that happened to you. That never should have happened
@@sonjaj1711 it wasn't even the worst doctor by a long shot. The power dynamic issue is a huge issue, like you say.
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!
You are so amazing and articulate. Exactly why I never consented to hospitalization. You are a voice for the voiceless.
You’re a strong woman Lauren! Thanks for sharing this
I love this video, before even watching it whole, simply because you started it by self-critically assessing your privilege. Wonderful, meaningful and insightful work. Thank you.
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
I lost a great friend earlier this year. I am Brazilian. The health system here is also not good. He was treated by the private network. He was hospitalized for only 3 months after the suicide attempt. He was misdiagnosed. It was necessary to make a video showing an outbreak of him to prove that he was not only-depressed.
The psychiatrist practically did not communicate with him and with his partner. It was early recommended so that he could be alone at home.
The only one who saw him was a psychologist, once a week, very quick and superficial consultations.
Extremely slow medication changes. The antidepressant and then the antipsychotic was causing him a lot of anhedonia.
Then, after several monthsof his suicide attempt, at a time when he was alone in his apartment, he committed.
I am so so sorry to hear about this horrible experience your frirnd had, and im sorry you had yo lose him to this.
I am so sorry for the Brazilian man who has been killed by police. In Italy we had a poor schizofrenic boy killed by 2 very young Carabinieri scared that he could have a gun. He just weared his underwear.
@@ange8549 i'm so sorry for this tragedy too.
I believe the care system is different everywhere you are in Canada. My cousin lives out in the country and he was not able to get help before he lost his life to the illness. I'm fortunate enough to live in the Ottawa area and there is a program here called first psychosis I was able to get into after I was released from hospital for the third time. Unfortunately it took 3 times going in before I could get the care I needed.
The mental health system and entire medical health system is a sick-care system, not a health system. It is for management of disease, not promotion of health. Until the system becomes an actual health-care focused system which requires a completely revolutionary process, this will always be the case. Mental health really is in the hands of the individual. It can seem overwhelming or daunting, but it's also actually
empowering.
It is and it isn't. The thing with schizophrenia spectrum illnesses is that it doesn't sit well within either category of "health" and "disease" because it is a disability, specifically one where your agency can be severely limited in a psychotic state, and there can be very little time between the warning stage and an emergency situation, such that taking an appointment with a psychiatrist isn't really something you have time to prepare for. Sometimes the window in which you are able to act to prevent a crisis is when you start noticing that something's off, but if you go there, you are rarely appropriately treated and there's often the implicit assumption that you're wasting valuable ressources. It's only when you're off the edge and no longer able to make decisions that you can go to the hospital, and you're often subsequently blamed for your psychosis.
@@hugoblondel7866 I just think relying on the medical health system to make you well is a pipe dream, at this stage anyway. Everyone is treated for being sick-- all diseases and illnesses included.
That's fair enough. I agree with you that expecting a holistic treatment from the mental health system is unrealistic and possibly even undesirable, but I certainly think one area they could and should improve in is recognising opportunities to promote crisis prevention instead of crisis management. Getting support in the prodromal phase of psychosis or when there are extremely strong warning signs is impossible in the U.K. A friend of mine who was already psychotic and ended up having to be institutionalised was discharged from hospital after a quick chat from a nurse and a benzo when she voluntarily admitted herself and it was obvious her case was worsening.
A good analogy would be cancer screening and prevention. It's relatively easy to get that through the healthcare system once an abnormality has been detected, and for good reason, early and effective cancer treatment can firstly save lives and secondly prevent the need for more costly supportive measures and treatment in the future.
Things are similar with psychosis. A shorter duration of untreated psychosis is correlated with a much better prognosis. This means that having centres and procedures dedicated to crisis prevention could make the healthcare system much more effective.
@@hugoblondel7866 I hope to see those types of earlier interventions, as well as a breaking of the stigma so more people talk about their mental health which could lead to earlier help for individuals expressing mental distress more openly at younger ages. My point as well was that perhaps as people we should never really put our health and well-being in the hands of medical providers-- it's never worked in the past and likely never will.We have to remember to be our own advocates and champions, and eat right, exercise, and do whatever else we need to do to stay on top of our health holistically. We are the captains of our own fate still. I've just completely stopped relying so heavily on my doctors except for the bare minimal medication prescription and have personally done much better.
You're awesome Lauren
I’m glad you made this video. We have to speak up for ourselves even if we’re not listened to right away
Great video, Lauren. I especially resonated with the confusion around being referred away from community psychiatric services after a period of wellness and share your desire for client-centred models of care.
I would love to see a system that understands the overlaps between mental illness and PTSD/CPTSD and becomes more open to the excellent research on healing modalities for trauma that move beyond the medication and Cognitive Behavioural Therapy industrial complex.
With all the current media coverage of medical gaslighting, I don’t think your distrust of the medical system is a delusion at all! We are right there with you.
I’ve had so many of the same problems as you here in the US. It’s been such a frustrating and lonely struggle
Brillant, beautifully articulated Lauren - you are providing such a great service and so I thank you …
Thank you for sharing your story! Stay strong and keep persevering because you inspire others.
You are seriously telling the truth about what goings on with patients and the mental health system. We love you sis
So glad I found your channel. Thank you for sharing. I can 100% relate.
I’m just now understanding why I had post partum psychosis. I’m thankful to be a live
Thanks Lauren! Very valuable for us clinicians to hear 😊🙏
You are so well-spoken and forthcoming. Watching your videos is helping me with a family member in similar circumstances. I don’t know where we would be if he didn’t have anyone to advocate for him when times are rough. Ever single thing you say about the system is true in Manitoba as well. It’s all about the crisis. Thank you.❤️
Insurances are accepted here in the US. But my daughter's had psychiatrist's give her meds that were very wrong for her since they do meds first before looking more into what's actually going wrong with the patient. These have had severe side affects that she still deals with 5 years later even though she stopped taking them a long time ago. There's also a shortage of psychiatrists and every one of them has at least a 6 week wait to get seen and those needing to be seen sooner are just not able too.
Which side effects?
Excellent, excellent video! On point. I'm so sorry for the humiliation and letdown you've had to endure.
This was really validating. Thank you!!
You covered some great topics and expressed many thoughts I've had. Thank you.
My current therapists have been very, very good at looking at my social support system, employment, environment, etc, and I love them for it.
Hey Lauren. Another excellent video. It's very similar to my own story with accessing the right help over here in Scotland. Crisis management not the answer as you say. Thanks again for your honesty and openess 🦋🦋🦋
Thank you for what you do
To me, even more important than meds, is social awareness. The more there is, the less paranoia, fear, isolation, & struggle for everyone on both sides, the ones struggling or experiencing it , and the ones struggling and dealing with those who are experiencing it. The more our culture changes it’s habits in raising kids up to be more sensitive, understanding, gentle, tolerant, supportive, structured, having better safety boundaries, etc. the healthier/ happier we all are. There is an enormous “monster” in our closet. Part of that monster is that we are taught to deny soooo much, which is disempowering, and backwards, and damaging. Lauren and family, I am soooo deeply grateful for your bringing about so much awareness. Please keep going.
I am a bachelor of psychology student and I really like that you addressed the importance of environmental factors in overall wellbeing. In positive psychology, this has become recognized as an important consideration whereas in clinical psychology it is often overlooked due to time constraints.
Truth 🙌
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.
100% correct. Agree with all you have said. Thank you
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 ✨✨✨✨✨✨✨✨
Lauren... You're talking about an ideal world... Sadly we're so far from that... No one in this world is taken care of, it is capitalist and therefore its all about money. And that money will never be for the wellness of people. Things need to change in a very profound way of what you speak about should come true... Thank you for your great great efforts... I don't think i have ever received true support❤️♥️
I agree with you so much!
You are very thorough in your descriptions of mental illness and the mental health care system. I was diagnosed similarly to you - my first admission in 1991 was depression with psychotic features, my last diagnosis was schizoaffective disorder when I had a breakdown and hospitalisation in 2020. I think I suffer with that word you used to describe when you are in denial about your diagnosis as I don't feel it is accurate. In Australia our mental health system is broken, particularly after covid. It is great you have this channel as you are relatable and give such useful information to people who can feel isolated.
thanks for talking about this. its important to talk about.
Thank you for sharing!
This video is eye opening and definitely reflects some of what I’ve observed working in a psychiatric hospital. I work alongside the psych nurses directly with patients. I find there is a lot of inequality with how patients are treated according to class. It’s also hard to see how little power patients have in their own care. It definitely seems to increase their stress. Sometimes it’s complicated because some patients don’t believe they are in psychosis when they are, so I understand why they might be prevented from going home when they want to. At the same time, I am very uncomfortable with how little autonomy these patients have. I guess I’m wondering, how I can do better for these patients while working in a system that has so many gaps and flaws? If I were to bring certain issues to management, what achievable changes should I advocate for?
I would argue that the solution would be eliminating involuntary psychiatric hospitalizations and treatment - and instituting a robust system of comprehensive, universal healthcare coverage. Coercion and force don’t work - and simply make the recipients even more distrustful and resistant. This has proven to hold true from everyone to “anti-vaxxer” parents who refuse to vaccinate their children against various diseases because of some long-debunked theory that they heard - to the present resistance to Covid-19 vaccines. If supposedly “sane” people resist fairly simple, relatively unintrusive measures like wearing masks and getting vaccines, it’s perfectly reasonable why patients would resist psychiatric diagnoses that have the direct impact of jeopardizing their civil rights and medications that can have severely debilitating and disfiguring side effects. Perhaps it’s not “poor insight and judgment” that makes patients disagree with their psychiatrists - perhaps it’s a very astute understanding of the implications and consequences of being diagnosed with “mental illness”.
This topic is very relatable for our family. My son has this diagnosis and although I understand and appreciate your suggesting the patient's involvement and contol over treatment, in my son's case, he does not understand the diagnosis nor recognize when he is symptomatic. He did not receive the training needed through the years. Within the last 1.5 years he's become adament about course of treatment, however not in his best interest. He is 31, diagnosed early in college and has an average hospitalization of 2x p/year. Thank you as always, I think you are amazing.
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.
This is such a great video. For me, a big obstacle I've faced is being misdiagnosed with anxiety because I had insight, and the assumption that having some kind of insight means you're not psychotic. I ended up having a six-month episode without antipsychotics. Luckily I remitted thanks to antidepressants, but being told you're fine when you know something is off and you can't control your mind is an incredibly aversive experience. Statistically, it also makes for a worse prognosis because the duration of untreated illness is longer.
A similar experience happened to a friend of mine during a manic episode with psychotic features. She went to the hospital willingly because she felt something was off, was denied appropriate treatment, and was then sectioned when she had fallen off the edge.
My black son was in a study with Richmond Behavioral Health and I don't think they ever really told him what he had. He made the decision to get out of the study. He is in denial a year later. He refuses his meds and can hold down a job, has no money, has no life, has no peace. He threw himself down the stairs only to be kicked to the curb by the health professional and the hospitals
Waiting for disaster to happen before any kind of outreach or response happens seems to be the standard practice of everything these days.
Im a peer support specialist at CRC Community Rehabilitation Center CRC here in Jacksonville FL and poverty means you are simply placed in a group home and forgotten about. As a peer support specialist, i try to improve people and their quality of life. Its a shame that being on SSI or having no income means lower level of care. I come from a upper upper middle class income to rich income but currently on SSI and working a part time job and a full time volunteer job. Ive had both the very best and the very worse of care. When my grandparents were alive, i had a rich man's quality of care. Right now, im doing the best that i can to still have the right level of care. It seems i have to work to improve my status like with everything else which isn't fair im sick. Oh well. It takes people like us to change the world. Keep your RUclips channel, Lauren!
In a past life, long ago. This lady was a ruthless ice Queen.
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.
You’re the first middle class schizophrenic I’ve seen on RUclips. 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.
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.
This is such a large topic and I have experienced many cracks in the system and yes even from a place of relative privilege. As my depression became chronic and I was unable to work, limits of not having enough money showed another crack in the system.
I have TRD, and even though I have a great physician, getting the psychiatrist and psychologist help has been mixed results. You are correct that quality of life is not important as they are focused on acute illnesses. When I did day hospital I did notice that the inpatients did say that in there ward there was stigma between, depression, bipolar and addiction illnesses. Also heard stories where people getting out of inpatient and continuing the Day Program could not get a family physician, once they told the physician they had bipolar.
And last but not least unless you can be well enough to advocate for yourself, jump the hoops you do not get a chance. I eventually called the Southern Alberta Mental Health Access number (my physician gave me this number) and due to my TRD was given access to the Mood Disorder Program and finally getting a serious review and care that feels individual and is sustained. In my community they do provide maintenance counselling, just the 12ish sessions and call again when in crisis.
I could go on and I agree it is a matter of luck and persistence to get help, and even though my experience was not as traumatic as yours I have a healthy distrust of the system.
You provide such a great service and I admit until I started watching you videos I had the same uneducated wrong ideas about Schizophrenia. And mental illness in general (it took me two years to tell my family about my depression).
Lauren, this is a great video. Thanks for sharing your roadblocks. I’ve experienced all of these roadblocks as well while trying to help my husband, who has the diagnosis of schizoaffective disorder, navigate the psychiatric system. I went to nursing school AFTER my husband was diagnosed because providers would not talk to me and didn’t want my input. A BSN,RN degree gave me some validity as a spouse. My husband does have a lack of insight into his illness. I learned from YOU that this is called anhedonia. My husband would’ve have a much different course of his illness if he were in a position where he had to manage by himself. Neither one of us received ANY teaching on schizoaffective disorder, how to manage the illness, not even a therapist. All he got was medication management by a psychiatrist. So frustrating. As a nurse, we tell people that the schizophrenia spectrum of illnesses are like any other illness. But it’s not the same. If a person has diabetes they get meds prescribed, exhaustive teaching is done on managing the illness to enable the person to live a normal, full, satisfying life. I’m sure the lack of support has to do with money. And I completely understand your trust issues. I have them too. My husband was admitted for 3 weeks last yr. At discharge, the physicians assistant reiterated over and over about the importance of compliance. She overdid it. I interjected that My husband IS compliant . Sometimes (about every 10 yrs, in my husbands case) the meds just stop working and different meds are tried. I told her, my husband is 62 years old and has been managing this illness extremely well since he was 24 years old. He’s only been hospitalized three times. I do get infuriated when providers get on their high horse and make global insulting statements with a condescending attitude. My husband deserves the utmost respect for his efforts and my efforts as well. Thank you, Lauren, for validating these struggles and road blocks.
The system is good at "global insulting statements". Just take all the info you can from the system and run it through your own BSN/RN plus marriage experience, engage as needed and live life.
By the way Anhedonia is losing interest or fervor in that interest whereas Anosognosia is the condition whereby a person with a disability is cognitively unaware of having it due to an underlying physical or psychological condition.
This video is very well said. I don’t have schizophrenia, but I have Dissociative identity Disorder. Mixed with OCD, ADHD and severe anxiety. I found that my other symptoms were easier to understand until my DID symptoms hit. My therapist and boyfriend are one of the only people I haven’t seen judgement for. It’s massively hard like you said to be taken seriously unless you’re suicidal. Then when you are in the hospital… they most of the time are terrible. I’m thankful I finally have a good therapist to help, but it’s still a struggle with the more doctors in my life
Thanks Lauren, another wonderful video. Perfect timing for my seminar on shared decision making with students tomorrow. I'm teaching medical students doing their psychiatry rotation who will almost all turn out to be non-psychiatry docs. Did you know they get 4 weeks TOTAL in mental health during their four years of medical school? Depending on specialty, many will not get any more training in their residency (3-8 years after medical school). Most medical schools send their students through a state hospital or just an inpatient experience only. It is not surprising that the students may come away with only one perspective, since they see patients only in acute, institutional settings. It's extremely important for these future pediatricians, surgeons, ob/gyn docs, emergency room docs to also consider these issues as people living with mental illness diagnosis interact with the entire health care system.
I did love your one comment about the nurse therapist who helped you out with a roadblock. I hope to hear more about the good and helpful things health care providers can do to aid in recovery when this happens. I wish it happened more. I do believe it is possible and will keep watching this channel. We continue to play your videos for our patients.
All the best, Monica.
If you have a disassociative disorder it's even harder cause very few mental health professionals are well trained in them
I am 55y with DID and have found that finding a therapist esp a Social Worker who specializes in trauma is usually a great place to start. With any DID related disorder, I'd stay away from any DBT including DBT-PE. DNMS therapy is very good for DID and trauma in general. For what its worth, I have lots more advice from my exp if you need.
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.
So much truth here. On the failures of chronic care vs acute care, this is an issue with physical and mental health. ED and hospital excel at heroic medicine for acute conditions: heart attack, stroke, appendicitis, broken bones. They struggle with diabetes, chronic pain, substance use, and most mental health conditions.
Right diagnosis makes the difference between life and death. I was diagnosed as schizophrenic 25 years after my first episode of psychosis. I was not educated about my illness. So went on with life as normal until i figured out that everything was going wrong with my life. The diagnosis came too late. I had lost my loved ones and health was taking a toll. We need more transparency in mental health and more expert doctors.
On the one hand, it's good to hear that I'm not the only one who's encountered road-blocks like the ones you've mentioned. On the other hand, it sucks that so many people have similar experiences. I'm based in the UK, so most of the issues around mental health services are due to funding and it's a lottery if you manage to get on the waiting list and find the right person to treat you. I heard that most people who have mental illness also suffer from complex trauma and I wonder how much that plays into the chronic nature of these conditions since I know that treatment for trauma is long and difficult with only a handful of specialists available. I was wondering what your thoughts were on trauma and how that plays into schizophrenic spectrum illnesses since I would imagine it would feed into various symptoms and overall make things much harder for people living with those conditions. Wishing you all the best, thank you for making these videos I'm learning a lot and feeling more OK about my own experiences.
About that health professional mistrust "delusion", I don't have psychotic symptoms at all but I do feel that too, and it is important I think to acknowledge that much of it is due to medical trauma and quite honestly PTSD from all the abusive and less than helping experiences that we inevitably get when seeking out mental health care
Stay Blessed
excelente!
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.
If you spend a couple of months in the US, you'll amass enough material for a feature film on this subject.
I don’t have schizophrenia, but I can totally relate to this because of PTSD. Although I have always known that suicide and self-harm wasn’t the answer, fighting through those urges was so hard. Although I voluntarily committed myself, I nearly attempted suicide twice while inpatient. I was absolutely petrified that I was going to lose what little control I felt like I had, and strangle myself with my own two hands. With knives, I still have some occasional
anxiety, knowing those urges. However, like you, talking about, even as painful as it could be, has been very healing. It’s like doing exposure therapy in a way. It’s absolutely terrible at first, but it does get easier over time. When those urges and such do come up, I know how to manage them.
I am Muslim and middle eastern and I was diagnosed with schizophrenia last year. The biggest challenge I had is many RUclips channels that are Muslim and middle eastern they get it wrong. I don’t have depression or any other problem. It is hard for me to explain what I had to go through no one will understand. I can say this I went to the imam or Shiek and he told my family I needed a doctor.
Thanks!
Sometimes I get told by my psychiatrist that my issues are not real issues. They actually stop seeing me. But they tell me to keep taking my medications. 🤔
If you need medication you must have some real issues. I would think.
I've seen this. Just there tactic.
They deem the issues important and then if not they will save resources by not seeing the person.
But them telling you to continue treatment seems contradictory.
I guess they haven't completely cut you off.
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”.
I never expected anything free.......but I was in a very desperate state on one of your videos and I pleaded for help......anything would have helped.......I didn't expect much. But it went ignored. So I guess the message there is you're happy to help.......for a price.
This is almost parallel to the struggle we are currently experiencing getting help for my schizophrenic son. Also living in Ontario. Our system sucks.
Excellent videos
The words "anxiety around medications" reminded me of an interaction I had with a psychiatrist once...... I had already had extremely negative reactions to APs before (note: I don't have psychosis, I was "diagnosed" as schizoeffective after a 2 minute convo in a hospital, where I explained I had PTSD and had fears of my traumatic past repeating..... guess that makes me "delusional"), and this psych was trying to put me on another one. I'd already told her of the extreme TD I suffered from other APs, but she insisted I try it anyways.
I took it home, looked it up, and not only did this new AP have an even higher rate of TD than the others, but it also had an extremely high risk of diabetes, one of my greatest fears as someone uninsured and in poverty (at the time). So I went back and told her I wouldn't be trying it due to my concerns.
She literally laughed at me, and told me that my "anxieties" about the health effects were 'proof" that I was delusional and paranoid and didn't know what was good for me, and I just needed to listen to whatever she says.
Being treated like an idiot or something even less than human, was already a huge part of my trauma, so to then finally seek help and be treated like that again (and they even have power over my life and wellbeing like past abusers, they could forcibly detain me or inject me or ruin/control my life in any number of ways)........ my trust and sense of safety has taken a toll I think I'll never really recover from.
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
As you say we all have our own story and mental health story. Everything you say here sounds very familiar and I know people I speak with have also felt the lack of support or understanding…as the patient we should feel safe and in a position to regain power..while in the presence of professional. However, it is in reverse and like you & many of us out here. I pray for change and a safer future. It is unfortunate how this illness gets worse with poor care..which is why at this point I am treatment resistant bc I never had proper guidance. Always in & out of offices…with option to get on or off meds. In talk therapy didn’t get me further than I got myself…by self teaching. However, this is a illness filled with shame and to add the lack of support and add the labels to top off. It’s a nightmare. I do believe that more people like yourself, who are willing to speak up…is the only way people will learn to get help as soon as possible. Thank you for making a difference. God bless
The mental health care in North America is BROKEN BEHIND REPAIR
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 …
I’m a ex drug addict third year in recovery and they just said Psychosis even though that isn’t a diagnosis which really frustrates me. Only think is I don’t hallucinate bad. I did have one today that was the worst it has ever been but pretty much I’ll see things in my peripheral that aren’t there. Not sure if that is hallucination. Like I’ll mistake objects thinking that it’s a person like street signs bikes fire hydrates.
Can someone with schizophrenia work in a hospital setting nurse/doctor? Or become a psychologist?
How strange that may sound. My education in psychology and social science was actually not an asset when meeting other professionals. They underestimated the severity of my poor mental health. I was one of the peers in a sense. I was treated for depression but they totally missed my BPD diagnosis. 20 years after my first contact with the mental healthcare system, I got a full diagnosis - and medical help (antidepressants didn't do the job). I was 40 years old when I finally got the meds I needed. 20 years wasted just because I knew the lingo, had the proper education.
I agree with some of your points, and I disagree with some. But my question is: If, based on your experience, you feel strongly about the way psychiatric care should be handled in Canada, have you considered trying to work in some form of government? Or working with your legislators to draft legislation that would start helping individual issues? I'm an American who studies neuroscience, so I'm not intimately familiar with the Canadian government, but might that be a good place to head with your ideas, so you can actually effect change?
Please please please can you do a video describing the diferences in drug psychosis and schizoaffective psychosis?
One of the worst is the fact that to get case management - psr, people that can organize care for you, you have to talk to the state. Not easily accessible for the general public.
I’ve had psychiatrists tell me I should have been a butcher after being taken to the hospital for a self harm incident. I’ve had nurses shame me for taking time away from real patients. The system doesn’t want to deal with us and I don’t think it’s going to change any time soon.
Unconscionable is the edge of "Occam's razor". l believe this because unconscionable negates many "crap shoots"; that are deemed a plight of "Occam's razor". -OKA
anosognosia: i hadn't heard of this but i was surprised (in my naivety) that schizophrenics don't necessarily understand everything about schizophrenia. my girlfriend who suffers from (some form of) schizophrenia won't talk about it, and the only chance i had to learn anything about her situation was when i met her father, he told me _he_ is schizophrenic, but he deals with it (and in fact he's quite successful businessman) but that his daughter, my gf, was in denial.
after knowing her for six or seven years it seems to me she has a condition more complicated than just schizophrenia, she told me she has a learning disability - which i find strange as her schoolwork was from someone very intelligent - and i think some kind f autism is involved, but the point is she has no idea more than i what her actual diagnosis is, and she thinks everyone around her is weird, and doesn't understand why they treat her the way they do.
she is aware that she has mental health issues, but i think she thinks everyone else is like her too, and she doesn't understand why she gets the reactions she does.
900mgs of Seraquel a night literally stole my soul for 8 years. I couldnt think, couldnt play a song in my head. The drug had only just been made available. Seraquel made me paranoid, id hear and see things. I had 3 terrible episodes when i was on it. There was one incident where health workers forced me take 1300mgs at once. I honestly felt like i was going to die. Id not had any episodes like those, i was a well young man before it. Not had an episode again 6 years on and after Drs apologized for giving me such i high dose and for so long(i stopped seeing psyches in that time, the drug was part of their "deal"). I had headaches for a long time from overthinking, it was difficult to slow down and get back to normal thought patterns, the headaches have only just started to go away but im still struggling with my mind.
Drs can make u very sick, im not a guinea pig but thats how they treat people, we all know who they turn around and blame.
I hear you about Seroquel. I was prescribed 25mg because of a bad day in 2003. I was eventually up to 400mg in 2010, despite never having a problem with psychosis. I quit that shrink and tapered down to 25mg by 2016. It was hell at times. I finally stopped completely in March 2022, now I’m only sleeping 2 hours a night.
Nobody has any ideas or answers. Nothing else works (at most 3-4 hours a night on other drugs). I don’t know if my sleep will ever return to normal, which it was before.
We aren’t alone. I was talking about this in a group, one other person in the group went through it. Hang in there, thanks for telling your story. Thanks for this channel!
@@stevenpugh5412
how did you get swept up in the drug game for so long if the meds didn't positively feed back...?
Also was your sleep troubles before the meds...?
@@WDBsirLocksight
I trusted the wrong psychiatrist. I thought she knew what she was doing, she didn't. (Don't believe the hype about McLean Hospital, I had a therapist there that broke all kinds of boundaries with me, when it all fell apart, they discarded me and closed ranks around her. Now she's working at the Pavilion) Granted I have treatment resistant depression, but I trusted too much and didn't ask enough questions. Worse, the same thing happened to me as a teenager in the 1980s. I was sent to a residential school, they took me off those drugs cold turkey. I vomited for about 10-14 days.
Like everyone else, sleep problems now and again before the Seroquel. Certainly not months of 2-3 hours of sleep like I have now.
Moral of my experience, if being prescribed a new drug, ask many questions, including, what is going to happen if stopping the drug, both after short term and long term use.
P.S. It took a nurse practitioner to tell me the dangers of benzos. Two psychiatrists and 14 years of treatment, neither of them ever warned me.
@@stevenpugh5412
That nurse practicioner was a God-send. Most nurse practitioners are excellent. They should be running the system.
I like ur advice 👍
I'm sorry to hear of this journey.
It's known psychotropic drugs without careful optimization will screw up the metabolism and its difficult if you have pre-existing obesity or metabolic disorders.
The only thing I know about McLean is the supposed location of "Girl Interrupted" movie. But I've heard the Pavillion at McLean is suppose to be world class.
@@stevenpugh5412 same story here and funny you say nurse practitioner. I had someone in the same category listen to me properly, my life story and how i ended up where i was and i didnt hold back on details. After all these psychiatrists had put me through, this Nurse i spoke to said to me, i dont think you were suffering from schizophrenia at all, you have serious PTSD. They were right on the money. Ive been through hell because of Psychiatry, id been through hell prior, still going even though ive broken free of psychs. I had always, always needed counseling. Shame and pride, not being told the knowledge of my condition held me back when i was younger.
Not one health practitioner with the knowledge of Seraquel and its dosage requirements hasnt looked at me with shock when i tell them how much Seraquel they made me take per night. Psychiatrists ruined my life, they do it for pay.
Are you in Ontario by any chance? I’m going through something similar right now.. I’m a long term palliative care patient, and even I’m having trouble finding therapy. I’m on disability, so I can’t afford even the sliding scales (the lowest I’ve found is $100/hr. I have no idea what to do 🤷🏻♀️
I’m with you.. I have such bad anxiety around anything medical (which is hard to navigate when you’re dying of a progressive disease). Our system is so broken. I really hope our generation can change it for future generations.
Not only is the mental health care system broken; people are slipping through the cracks in all aspects. It took 13 years to find a diagnosis - it was too late for me. Going so long without treatment caused the disease to go after my nervous system. I think it’s up to our generation, to illicit r e a l change! I hope you’re doing well, and in a good place 💜
Do you get case management in Canada? I am on disability so I get a weekly case management session. This really helps hold all my mental health and physical health care together.
Case Management is almost non-existent in Canada.
It depends what program you are in. The various provincial developmental disability programs have case mgmt yet my friend with schizophrenia told me a case manager in mental health wasn't all that helpful (considering some bias).
I was told that wholistic life case mgmt isn't the same as clinic MH case mgmt. I was told I didn't fit the model at a mental health clinic mainly due to the psychosocial case mgmt piece.
Some local CMHAs have limited access to outreach workers or ILS programs. Some programs are only for whoever is deemed severe as in some types of MH Approved Housing.
There is a case mgmt association in the US. There is also a Developmental Disability Nursing Association in the US. And for example a physiatrist (rehab neuro) in the US can do a wholistic assesment but not in Canada. Of course there's insurance that doesn't pay for various reasons in the US.
In lower population centers the system may be able to support a really good case mgmt structure.
Weekly? I live in the US, NY specifically, and have been denied disability 3x even though last time I couldn't tell the doc what question he'd asked me and always screw up the count backwards by 7 thing.
I have an insurance plan (via medicaid) meant for people with disabling mental health conditions and this includes case management. They're supposed to get in touch 1x month but don't. It's sporadic. I haven't had a proper psychiatrist in over 6 months either
I have been offered a full mental health check for the first time in 15 years. All I have been offered in the past is antidepressants. I have visual and auditory hallucinations as well as delusions on top of depression and anxiety. I am 39 now and my metal health has become nearly unbearable.
Lauren, my previous post was not a criticism. New directions often lead to new growth in mental health. That is all. An ill mind must grow to be well. That requires movement in a new direction. You can do it. God will do his part You might be amazed at your possible future and influence. My journey through mental illness went on for 40 years. Small price to pay for the Life you receive. When you give up your right to yourself to Jesus and the mental health unit of his word.. You are one of the most prominent influences on RUclips, For schizophrenics. We keep turning in.
In my experiences, most people in the mental health [industry], avoid giving a proper diet for recovery, over the one to two week minimum. Most food neglected the need for nutritional metals, like calcium, zinc, iron, gold, silver, cobalt, etc.
❤