Home, Diag Forum, About, Contact Us, FAQ

Why Making "Blanket Statements" About Schizophrenia Can Be Harmful


#1

This is just my opinion and I just want to share it, it doesn’t apply to everyone but it is something to consider. I myself consider it regularly.

I fully understand the ‘roller coaster ride’ that is schizophrenia, especially schizophrenia combined with drug addiction. I understand that (especially in the beginning) medicines need constant regulation and some work for a time and then stop working all together. I also understand non compliance and all of the downfalls that go with that, but, I have been around a lot of seriously mentally ill people in my life, my son, my sister and other family members just to name a few.

In my own personal experience the ones that do fully comply and stay drug free from street drugs and alcohol and who have strong and steady support and regular medical care increase their chances of doing the best in the long run. Does everyone go into remission? No. Are they 100% cured, not usually. BUT can many people eventually get very stabilized, function basically well from day to day, communicate effectively, have less positive symptoms, re-engage meaningfully with their family members, and find their own ways to enjoy every day life and create less of a burden on their loved ones? Absolutely! It is possible (not promised) but possible that it can happen. My son and I are this example and I never take it for granted.

I for one wish everyone was guaranteed these basic milestones with their ill loved ones, maybe someday, mental health care will become as much of a priority in the medical community as cancer and heart disease is today. Then maybe great advancements will be made and hopefully our loved ones can reap the benefits.

In the meantime, This forum is the perfect place to share our sadness or our happiness, our victories and defeats, and our own despair or joyful moments and our personal tales of care taking and its many ups and downs, we have all been there and we all need a helping hand or a listening ear along the way…

Even though I actually rarely see it–the times I do see it- breaks my heart —Wholly negative blanket statements like “Things will never improve for anyone with schizophrenia”, or “just give up on loving any schizophrenic partner because it is nothing but downhill all the way” or “No medicine will do anymore than reduce symptoms for anybody” (while this is true in essence depending on what symptoms are actually reduced it can feel much like a cure to many) Let’s speak personally about our experiences but let’s never assume that all will have the exact same outcome or exact same feelings about our experiences, let’s not cast shadows, let’s only shed light…so we can see and respond and share with each other.

Even if as caretakers we feel gravely sad and depressed, or sick and discouraged or we’ve just thrown in the towel, we need to bravely address that within ourselves, get support and then mental and medical care for ourselves when it’s needed. In this forum we have to find our strength somehow and then share it with others when we feel like we can.

Caring for those we love who are very sick is often extremely depleting and harsh and can sometimes kill off our very spirit if we let it happen or lose our self awareness.

Then where are we? and where are our loved ones without us? Try to remember that everyone is so very different, in every way possible-even when very ill… although we all share many distinct similarities in our shared stories…no two schizophrenic patients are the same, no two treatments are the same and not everyone (caretaker or patient) wants the exact same rewards or goals from life…some just want peace and quiet, some want quality time, some want good communication, some want laughter and smiles, others would be happy with good hygiene and regular eating habits and some want the whole enchilada: for life to go back exactly as it was before the onset of the disease,

Let’s cautiously and carefully try to never accidentally extinguish hope for anyone, because hope is free and comforting and necessary and we all have different amounts of it at different times and we never know if our next unintentional 'negative blanket statement" just squashes somebodies last drop of hope out of them. I would never want to do that-ever. I love all of the contributors here especially the ones who have taken the time to reach out to me personally, because I know they truly understand, I feel less alone and more understood and that means the world to me.

Just food for thought, thank you all.


#2

Thank you for writing that.

There are so many people who have so much going for them who also have schizophrenia.

I am in 100% agreement with you @Catherine that people who accept treatment “and stay drug free from street drugs and alcohol and who have strong and steady support and regular medical care increase their chances of doing the best in the long run.”

I wish our family’s most recent positive experiences could be universal because I would be making a “blanket statement” like, just wait until your family member receives effective treatment and support. You will have some really good days again. There will be laughter.

I’m sad so many people go untreated due to the broken system(s) and that some cases of sz are treatment resistant.

I am grateful for every good day. I pray everyone everywhere with sz and all of their family members and friends get some positive relief from the hardest times.


#3

post deleted, post deleted


#4

Just speaking for myself alone, I prefer to focus on what I CAN do and what my mentally ill loved ones HAVE accomplished rather than focus solely on statistics. I never let any statistics (no matter how accurately compiled) dictate my actions or intent. If I focused solely on statistics, I would have given up and lost all hope a long time ago. By the way I read those very statistics right after my son was diagnosed and they frightened me but I am very stubborn, and fear has never stopped me from doing anything. I am grateful for mine and my son’s tenacity and ability to endure the process, today (12 years later) we enjoy the results of that. My heart goes out so sincerely to those who understandably buckle under the pressure and stress.


#5

post deleted, post deleted


#6

post deleted, post deleted


#7

My post was only a mere suggestion that we try to differentiate between being hopeless ourselves and blanket-ly saying any attempt to help any sz patient is a hopeless endeavor.
Not everyone will get well because they take medicines -BUT not everyone will remain gravely ill either and there is a whole enormous gray area of experience in the middle.


#8

post deleted, post deleted


#9

OMG do I need that hope right now I can barely function thought I was strong till this happened


#10

NAMI does provide many of the aforementioned grim statistics, they also provide a free class called Family to Family. I took this class many years ago and it helped me tremendously. I saw people with hope and success stories and I saw people who had lost hope with tragic stories. I could have ended up in either of those groups, currently I’m in the former group but I never lose sight of how easily I could move to the other.


#11

thank you @Hereandhere and I am 100% in agreement with you…:slight_smile:


#12

@GSSP. I understand where you are coming from. For 15 years since my daughter was diagnosed I was extremely optimistic and hopeful. I still have hope but its different now. I do believe that mental health professionals and especially the pharmaceutical companies do not always give parents the — the truth, the whole truth and nothing but the truth. I will always be my daughter’s best advocate – my daughter is not a drug user - however in the very beginning when she was in her early twenties she did abuse drugs.

What I’d like to see is a whole lot more research on this dreadful illness and also real help for those who are so fragile that they are unable to care for themselves. I’ve ALWAYS BEEN THERE for my daughter and will continue to support her. At times I feel extremely angry towards the Pharma industry claim about how the medication will help my daughter. It hasn’t. She is treatment resistant and that does not mean she isn’t medication compliant. She has been compliant and NOTHING works.

As an advocate I wish that in the beginning I was told the stark truth about sz that there are folks who are treatment resistant. I feel like I carried most of the load for making sure my daughter receives the help she needs - the only person who was very helpful was my ex-husband but I’m not longer married to him. My ex and I had problems but In some ways I believe my daughter’s illness helped break up the marriage. We couldn’t plan anything – overseas vacations were cancelled, etc, etc. Also, my other children did not want anything to do with their sister. My sisters, brother and mother lives in another state and couldn’t really help me. This forum helped me tremendously as well as NAMI but the way this awful disease is described is much too optimistic. I pray daily that scientist will find treatments that work a whole lot better than throwing pills at my daughter and hope it sticks. Nothing stuck!

Sorry to be so blunt but I’m so enraged by some of the claims to healing. Also don’t get me started on the Vitamin pushers – it doesn’t work. I’ve spent thousands and thousands of dollars seeking treatment for my daughter – traditional treatments – paid nearly $27,000 on naturopathic treatment – money that came out of my retirement – also took her to Chinese medicine practitioners, vitamin pushers, and became so desperate that I visited a seer.

My daughter is in the hospital now and has been for months. My heart breaks when me and her children make our weekly visits. The suffering of parents is awful but when I see my daughter’s face I see someone who has suffered year in and year out with very little relief. Yes, I’m angry - why does she suffer so much. I have done EVERYTHING to help my daughter and she’s still suffering. She doesn’t deserve to suffer so much and now for me as a woman of faith it’s all in God’s hands.


#13

Your daughter needs and deserves more help from the system. There is no way a parent could handle treatment resistant sz.

For the 15% of people who will survive, but not recover, who are treatment resistant even when taking medication, there must be safe housing with 24/7 support/supervision and medical services on site.

I completely agree with you about the alternative treatments. If those work, that means the person with sz is in the 25% of people who would have recovered regardless of what treatment they receive, which includes “yellow jelly beans” in Dr. Torrey’s book.

Just like with any major illness, there are cases with worse prognoses. Your daughter needs help our system does not provide because those in charge push the “recovery narrative” over reality. So many people need safe housing and to be actively cared for by professionals, but this is not widely acknowledged and such help is not available in most places in the US.

I do hope the treatment team for your daughter finds a safe and healthy place for her to live and do her best with the illness.

You did do everything and you still are.


#14

@Hereandhere. Thank you so much for your kind and strong words of support. Today I needed to hear your words.


#15

I think the most important role a forum like this can provide is to allow for the opinions and thoughts of all to be welcome.

No one is going to agree with everyone. Anything said on this forum is going to be a comfort to someone - whether or not it agrees with our own limited spectrums of experience.

We all have limited spectrums of experience. If someone tries to force their beliefs and experiences on others, this forum becomes extremely limited.

Some of us do deal with the harsher realities of this horrible illness. For some of us this is the only location where we can vent the powerful emotions we feel on the really bad days.

We can feel hopeless, we can feel sad, we can feel helpless, we can feel anger and then there is the next day which may be better or might not. We don’t control our timetables - these aren’t imaginary burdens we carry - they are our real life loved ones. If we can’t vent here where can we?

I don’t remember where I read this, but its one of those things I typed into my phone notes. Oddly enough, its about living next to the ocean.

“Living so close to something over which you have no control can make you fatalistic”

We need to have more respect for each other. Yes, mute is available, use it. But remember, each time you refuse to listen you are refusing to learn.

Some would prefer this just be a forum for people with medicated family members. Those of us who represent the 70% unmedicated majority - can just go hang, yes?

Bully to you and your child for your “tenacity” to do so much better than all of us. While I would like to hope my son’s life could be better if he was on meds, he is handling his painful struggle and trying to make a life for himself.

Starting a thread to complain about someone’s words on the forum? Bad form all around.

Men need to be welcome on this forum. (edited to add this last line)


#16

Pretty much anyone with a family member who takes medicine started out with a family member who didn’t.

AND there is a relatively large chance our family members might stop taking medication.

Plus, not everyone who takes medication recovers significantly or at all.

I think you are right, @hope, that anyone who chooses to be here on this forum BELONGS here and can say anything they wish.

And then everyone will respond in their own way. LEAP training can be used here too. I think this is a supportive place and we can navigate our differences in the spirit of care and comradery.


#17

On a much lighter side, this is a good one:


#18

For the sake of argument, because I recognize exactly why this thread was started, how would you feel if you were a new member looking for hope & support & the first response to your first post was that there is probably no long-term solution for you.

Would you stay? would you be more depressed than you already were? would you be so gullible that you just gave up right away?

On the other side of that, the person I think this thread is about handles things so well in the videos that he posts - and you can tell that he does care. After reading his words, I was pleasantly surprised by how nice he appears to be. And, I’m betting that he’s tried & tried with no luck, so the “it doesn’t get better” statement is his reality.

Maybe, it will be my reality too one day.

I’ve certainly been where I’ve had to decide that my baseline was that my son was still alive at that moment - and that I had to be thankful for that. Anything past “alive” was a bonus. And, I’ve also been at points where I’ve thought that if he wasn’t alive, it would be a mercy to him no matter how much it hurt me.

As far as statistics go, people beat them all the time. And, you can twist statistics to make them say anything you want. So, math can lie. Not the actual numbers behind the statistics, but the people who bend them to their own purposes. Maybe the above statistics are true, maybe they’re not, but when you get down to a study of one, they don’t really mean a thing.


#19

I’m with you Catherine. If I kept reading only statistics, I would be discouraged and probably lose hope. That’s exactly what I did in the beginning and also had a hard time with being angry. For me, no hope meant no action. I was stuck, staring at the wall for weeks. As I learn what I can do and what I should not, it gets better. I would so rather live with hope and keep learning along this journey. I feel my daughter deserves it and so do I. It has been a long process but she is getting better and I don’t know if she would have if we both did not have hope. My daughter read your post and says you should write a book because your words are perfectly relevant to what we live everyday. You have been a guiding light throughout the process of learning about this illness.


#20

Heartfelt thanks @dkgreg (and your lovely daughter) you make me blush…lol…I do write from the heart and as I think and I am nothing if not honest in relaying my experiences to everyone here. I am so glad they have been of some help, That is all I could ask for. So happy to hear that your daughter is doing better, music to my ears :slight_smile::musical_note: