I’ve been crying a lot today, almost all day! I probably should feel less sad than usual, though, because last night I was able to get my son to go to a family get-together. He doesn’t go anywhere. I made him promise to go because my sister just got married and they’re leaving in a couple days for about four months and she wanted to see him. And I’ve been trying to get him to do some things with me, things that I hope won’t make him stressed. So he went. He smiled but didn’t talk unless spoken to and every chance to slip away, he would go down the hallway to the last bedroom and lay there in the dark. This made me feel so sad for him. So today I am having a bad day.
Just keep in mind that this disorder isn’t cured in a day - its a process of small steps, sometimes backwards, but if you keep working on it some amazing progress can happen. I see it every day here on the forums. Try to stay hopeful and keep working on those small steps.
I started to title this post “Baby Steps” because even as sad as I feel, I talked myself into believing it was a baby step forward. Thank you.
Hello, I think there is also a cycle to sadness. When there is lots of stress and difficulty, it’s just a time of getting through, if possible, seeking help, if available, holding some kind of tenuous space of support for a person I love who I don’t know how to help.
Fast forward to the good days. After months of hedging about attending a family event, my family member almost didn’t go, but showed up and did relatively well (about what your son did with almost no talking and numerous disappearances). And the whole time I felt like, he’s doing great, which he was, compared to how he had been doing months earlier.
It’s these good days that the sadness catches me off guard. Maybe because it’s finally (or temporarily) safe to let the tears flow.
So you understand exactly why I felt sad. Everyone else looked at me and said, “He did so well. See?” And I just nodded my head because I didn’t want to cry in front of everyone, especially my son. But when I got home to bed I cried myself to sleep and as soon as I opened my eyes, started crying again. I had a couple of days this week that I didn’t cry at all. I thought, well, now maybe I’m going to pass into the next stage, Anger? I do feel anger sometimes, not at him, not angry with myself, just a feeling of anger, and I get really angry when I read something or hear about something putting serious mental illness in a bad light, causing stigma!
And what you said about the good days. . . maybe you had a feeling of nostalgia, before schizophrenia? And that’s what made you feel sad? I feel sad almost all the time right now. I can’t even look at old photo albums. I’m hoping someday I can. I can’t talk on the phone when I’m like this. I mean, I can’t reach out to a friend for support, because there would be no words, just me crying on the other end. So I know I’m isolating myself and I know it’s not good for me, but I can’t help it. Yesterday was a good day for me so it was perfect to go to this family dinner, but the sadness came flooding back.
My heart goes out to you! What a great support you are for your son I’m very impressed by your son’s willingness to go to a family get together, and by his ability to self manage by leaving the room when he knew he needed to. I think I used to be more like your son, and social gatherings are still difficult for me. My son and I both have schizophrenia, so I also understand your tears. We want our children to be happy and have a wonderful life, without extra struggles. My son is more social than I ever was and he’s managing his life well. Your son will benefit from your obvious knowledge, support and encuragement. One day at a time, and it’s ok to laugh and it’s ok to cry. Wishing you and your son well!
I tend to see the sadness as building up and finally releasing when things are okay, as in, it’s safe to cry and withdraw a little bit.
I have not taken the healthiest path and am extremely withdrawn (with my own set of MI diagnoses…). We live in an insular, conservative community where even good-hearted people seem to be more and more judgmental the less they know about mental illness. Many people question me in stigmatizing ways about my family member and I just can’t be around much.
What people with sz and related diagnoses write on this forum suggests to me that we are all going through certain amounts of loss.
I am grateful that my family member and I are getting along in the present.
@Hedgehog, Yes, “We want our children to be happy and have a wonderful life, without extra struggles.”
Yeah, it’s a cruel disease. But that’s nice that his sister cared about him enough to want to see him. I’ve had paranoid schizophrenia since 1980 when I was 19. I’ve been through long periods where I know my family felt bad for me.
When I was 21 I was locked up in a psychiatric hospital for 8 months with 100 other patients. I was delusional and psychotic and I suffered greatly. The hospital let you have weekend passes to go home if you cooperated with their program. My dad would pick me up and I would spend the night in my parents apartment. We might go out to eat or go for a walk. But then it would be time to get back to the hospital. My dad would drive me back and walk me inside. The nurses would let me in the door and then lock it behind me. There was a little window in the door and my dad would look through and see me shuffle off amid other patients who were half dressed or lying on the floor or screaming or pacing and he told me years later that it was just so sad that he felt like crying.
Well, 8 months later I got out and moved into a nice group home. 9 months later I got a job and I stayed there 4 years. I’ve been working ever since except that I had a fall from much stress about a month ago and I took a leave of absence from my job that I’ve been at currently for 4 years.
I also lost my housing but I had been living on my own since 1995. My biggest stressor is that my mom died last month. It tipped me over the edge and I had to be hospitalized for two days and I also had to stop school but I am 4 classes away from my degree. I’m taking a break from all that but I expect to start back to work and school in a month or two. Take what you will from this.
Hi, my name is Val. I too have a schizophrenic son. He was diagnosed almost 6 years ago two weeks before he is 24th b’day… he was in and out of the hospital probably 4 or 5 times… the latest admission was in June. He is on Invega Sustenna 256 mg a month injectable. He is doing awesome. As long as your son has your love and support, he will progress. The medication is vital though and you don’t say what medication your son takes… my experience is that my son would not take the pills, no matter what… he would for a couple of days or weeks, but then would stop… he also did not show up one time for the injection and then quit altogether. That was the reason for his most recent admission. Now we take him monthly for the injection. We pick him at his house and drive him to the place where he gets it. We found out that the interactive we are, the better it is. It’s a hard pill to swallow, but you are not alone! If you ever want to reach out to me, please feel free to do so. I was the same way you were the first year or so. I guess I got tough. Now if he goes off his meds, I admit him against his will. We as parents know what’s best for our kids, they don’t see it. In past months when it would get close to shot time, even a week (before we up’d his dosage), he would withdraw, hide in his room, not talk to anyone and definitely not show any love or affection; but I will tell you that today, my son is going for his injection…today, my son told me that he loved me…today, my son is in an awesome mood and today, I am relieved and today, I have a renewed hope that if we just keep him on the right track and on his meds, he can get closer to where he was before he got sick. Just hang in there, be diligent and love your son, no matter what.
I just read your post. I am searching for encouraging information. My 19 year old son is currently in the hospital. The doctors said they will not diagnose for several months but everything points toward schizophrenia. We are devastated and need hope. Your article is helpful. Thank you
That’s a good sign. He’s managing his illness. I do the same when I start to get overwhelmed with too much input. I find a quiet dark space where I can reduce the input and stress load. When you see someone with SZ doing this, it usually means they are getting overwhelmed and dealing with it as politely as possible.
I agree with this, the last family gathering I went to, I would make tactical retreats by going outside and smoking my ecig when I got overwhelmed.
I love him so much, my heart literally aches when I see him with his negative symptoms. He is also on the Invega Sustenna monthly injectable! And has had just the one psychotic episode, which landed him in the state mental hospital. Before that he was so dirty and smelly, refused to shower. At that time he was on risperdal and wasn’t good about taking it. There is a lot more than just the bad hygiene, I’m sure I don’t need to explain. I don’t know, I guess it’s just I wonder and hope and pray that someday he’ll have some fun again. It hurts so much.
Been riding the grief wave since yesterday. I was trying to figure out the timeline for my son’s schizophrenia. Prodromal age 17, withdrawn from friends, dropped out senior year and got his GED. then at age 23! diagnosed Schizoid Personality Disorder and put on Risperdal, pill form, which he wasn’t very good about. Is that a long time to be in the prodrome, from about 17 to 23? I don’t know what he was experiencing. Strange behaviors started happening. I thought it was the SPD. The psychologist’s report said it was unclear whether it would turn into frank schizophrenia and gave him a prognosis of poor and I only researched SPD, not schizophrenia.
I didn’t know SPD was very likely to go all the way to Sz! Two years later, in Jan 2013, after a lot of problems, like poor hygiene (he refused to take a shower because the water splashed off him and he could see every droplet!!), he was having fender benders with things, not other cars, thankfully, And he was eventually, not arrested, but the police were called and they held him till his dad came for him. I think this was the first episode of psychosis or had he been psychotic for the last two years? I think maybe he was! My father was ill for about two years, with heart problems, and surgeries, and he passed in 2011. My son came to the viewing at the funeral home wearing swim trunks and tee in December! He just wanted money for beer, but he did take a quick look at his grandfather, looked a bit puzzled, and asked if it was his granddaddy. So from some time before Dec of 2011 to Jan 2013 he must have been psychotic??? Isn’t that a lot of prodrome and then a lot of psychosis? I think I understand this points to a pretty poor outcome. Am I right?
Can anyone explain? If you can understand my confusing message! So I’ve been crying. A lot.
I forgot to mention that he was committed to the psychiatric hospital for a month and was diagnosed there as paranoid schizophrenia and has been on a monthly injection of Invega Sustenna since. And at first after hospital, he was so fun and animated and wanted to go out and do things, but gradually that all stopped completely and now his negative symptoms are worse. I’m worried. Am I overreacting?
I don’t think you’re over reacting. I cried buckets when my son was diagnosed, but I get the impression you are not very able to help yourself or him right now. When my son was diagnosed, I googled a lot and found out about the Schizophrenia Recovery Movement. This is a movement of people with sz and their supporters, who say they CAN recover. This forum is actually part of the movement. The first and most important thing I learned is that the person diagnosed with sz needs ABOVE ALL to have HOPE. That means they need someone to tell them that yes it is tough, but with support from family and with medical treatment they CAN recover.
There are lots of people living happy and successful lives with sz. Certainly, not all of them will become top academics and professionals (but some do). But they can set their own goals and achieve them.
Many people with sz get married, have children, and have successful family lives.
Read the Diagnosed boards here. People are doing very well.
After my son was diagnosed various people in my community “came out” to me about their own or a family members’ sz. I know three people with sz and one with bipolar, all leading ‘normal’ lives. One of them is now one of my best friends.
You need to find hope, and convey it to your son. Then you can work together effectively on recovery.
It doesn’t mean there will be no relapses, but life can get better very fast.
Hi Daquilamarguerrite, my prodromal phase started at age 17 and I was diagnosed at age 19. No one ever gave me a prognosis. Maybe they told my parents but my parents never told me and our family is pretty open about all of my treatments and stuff. But I’m 54 now and I occasionally do some research about schizophrenia online and I have been on several websites that list a bunch of factors that contribute to a poor outcome. I had a lot of those factors.
Number one; I was not a well adjusted kid. I never had a lot of friends, I never had a girlfriend as a teenager.
Number two: A had a long Prodromal phase that started at age 17 as I stated.
Number three: I was diagnosed fairly early on. Bad sign.
Number four: I spent a year in SEVERE psychosis without being on medication.
And a few others.
And here’s a small bit of my history. Diagnosed at age 19 and put in a house for schizophrenics with no medication the entire time. I suffered pretty badly with psychosis. The home didn’t help so I was put in a locked psychiatric hospital for 8 months while still suffering severely with paranoia and delusions. They put me on a massive dose of medication which didn’t make me get better but it stopped me from getting any worse.
I got out of there and my parents arranged to put me in a nice group home. Basically, I spent the entire eighties living in group homes and semi-independemt living houses.
But I got a job when I was 22 and I stayed there for four years. Unfortunately when I was 25 i got addicted to crack and I spent the next three years wasting my time and money on crack but I still stayed employed somehow. And in 1988 I relapsed and made the rounds of hospitals again.Well, in 1990 I got clean and I got another job. I moved into a board & care home and I kept working and then I started college taking two classes per semester. I started going to AA, CA, and NA meetings at least 5 or 6 times a week.
Incidentily for the five years I lived at this home I took the bus and walked everywhere. That meant getting myself up 3 or 4 days a week for my job and walking 4 blocks to the bus stop and catching a bus for a
1 1/2 ride to work and then an 1 1/2 hour trip back. Two days a week I caught the bus for a 45 minute ride to school and than back again for another 45 minutes ride.
Anyway, I have worked pretty steadily since 1983, I now need only four more classes for my degree, I lived independently on my own from 1995 up until about two months ago. I have driven my own car since 1997. I take care of all my own appointments and manage most of my own affairs. Like I mentioned, for the first two years of my disease it was severe. I had little hope and I saw no light at the end of the tunnel. There was no clue that I would ever get better. But with my entire families unwavering support, medication, seeing psychiatrists and therapists, and using various resources in my area like vocational programs and day programs for the mentally ill. I have had a measure of success.
Well, I have to tell you I had a big setback two months ago. My mom died and at the same time I lost my housing. To put it bluntly, I was hospitalized for two days for being suicidal. Hey, life’s a gamble, right? I had to quit school and move back into mental health housing and I had to take a leave of absence from my job. I am now living in a room with another client in a large complex with 25 other people.
With some help from my family and much helpful support from people on this very site I will get back on my feet as soon a possible and pick up where I left off. So that’s a little of my story. I hope it stops you from crying for a little while. Good luck to you and your son. Don’t give up, there is hope out there. It’s tough I know. I stayed up all night last night because I couldn’t sleep. I was using my computer on this site and the last few months hit me all of a sudden and the enormity pf the misfortune I’ve faced in the last few months hit me full force and how hard my life has been and how my mom is gone and I broke down and cried. It’s only the second time I have cried in 30 years. Life is tough for everybody, no exceptions. As schizophrenics it looks on paper that living any type of meaningful life is impossible but hey, there are other people who have done as good as me or better.
I’m living proof that hopelessness can turn around into success. I can’t of course predict how your son will end up but there are things you can do to make his chances better and make his recovery a reality. Good luck and take care. Take care of yourself so you can be there for your son. Don’t be afraid to have a little fun. it’s no sin and it will help your mental health.
@77nick77 Thank you for sharing your story and helping so much.
I am really sorry about your mom and hope the tears were part of healing.
No one can predict outcome for anyone.
I understand you love your son and want the best for him; this can happen no matter what diagnosis he has and no matter what factors into the onset of illness.
I am a very nostalgic person and I think that when there are good days, it reminds me of the good days before Sz. Memories of my darling little boy, who was happy and healthy make me feel sad!!! That’s so sick! And it’s also so very unfair … the memories of him before Sz shouldn’t be painful! A mother should be able to look at photos and have memories that make her feel happy, so I am really angry at Sz!