Family and Caregiver Schizophrenia Discussion Forum

Explaining the pain of schizophrenia to caregivers and loved ones


#1

Hello,

I would like to help caregivers and loved ones understand the pain that goes on inside the son/daughter girlfriend/boyfriend etcetera’s mind.

While you may only be seeing irrational behavior and stuff like that you must understand the great deal of emotional pain behind this behavior. The pain that is not visible or understandable inside the person’s mind. I’ve been diagnosed so I know what I’m talking about. So hear me out at least.

This pain is not understood by caregivers because it’s simply not in your “emotional vocabulary” so to speak. To the average person having a shattered mind is quite literally, pain unimaginable. To put it in perspective, I’d rather die of crucifixion and then go straight to hell for eternity than live a long life with this mental disorder.

It is my hope that this brings understanding to the eyes of caregivers.


#2

Schizophrenia is nowhere near the same as being mentally challenged, because it’s a plagued intelligent mind instead of an emotionless autistic baby.


#3

My son has also reminded me of the pain. Intellectually, I understand, but I think it is sometimes we lose sight of it. thanks for the reminder.


#4

I can see the pain in my son’s eyes, but can’t even begin to imagine it. Thank you for sharing this with us.


#5

Here is an expression via music. And looking back, I believe I can understand Vincent Van Gogh much better.


#6

Play it for your loved one and watch magic happen.

:+1:

I assure you it’ll strike a wondrous chord.


#7

That’s good, brought me to tears.


#8

But I get it, my son has told me before he doesn’t feel he fits in this world. That breaks my heart, because he is so kind, always looking out for the less fortunate. On the days when I don’t know how to reach him I just want to wrap him in my arms and love it all away. If only a mother’s love could do that, sigh.


#9

From a son…im being as productive as I can
But Im not “hardwired” for most stuff.

Maybe your kid is the same way?


#10

I wish I could reach him. I feel like there is so much silence now because at times, everything I say just makes things worse. My son won’t take meds but we’ve only been at this for a month. I wish I knew what to do to get him to try. Thanks for sharing SnowyOwl1. It helps…


#11

It’s hard to explain to people these illnesses. Between living with symptoms and or side effects its difficult to explain to a normal person. My emotions are sometimes wild due to the schizoaffective disorder but the medication stunt my emotion reponses.


#12

that commercial with the frying pan and the egg “this is your brain on drugs” is basically how sz is for me, without the drugs ! all scrambled up. a medicine that straighten my thoughts out is a blessing. its finding the right treatment that is the most important. and trust me, it will take time. I’ve been going through different meds since I was 14. and I’m 20 now. now doc visits are like “tried that, tried that, tried that” I think I can say things are working out sorta now.


#13

My son wants nothing to do with them. I mean nothing. I’ve bribed, suggested, forced, pleaded, threatened, cried, everything. People say “kick him out” unless he takes his meds. I’m sorry, I just can’t do that. He doesn’t know how to take care of himself. It’s not an option. I am so open for suggestions…


#14

It feels like being at the mercy of the thought police, because you think other people can hear your thoughts often times, and like being at the mercy of a tyrant that has it out for you, because the voices command, belittle, and threaten you. I’m on meds because it makes the voices go away. Tell him that the meds will silence the voices. I may not be completely in my right mind, but the freedom from the voices is something I cherish very much. It’s also painful because when you do occasionally come to your senses, even without meds, you realize your life is falling apart and all of your hopes and dreams for an independent life are shattered, and that is its own level of pain. I feel pain just from being a recluse. I’m going to church tomorrow for the first time in a long time,and I know when I try to make small talk, I’ll have to explain why I’m still taking classes and will be for at least another 10 years at the age of 25. Years old. I have trouble explaining that without breaking down and crying. I’ll try not to cry tomorrow, but my grandma died last night so I might have more trouble with that than usual. If I could just get better at driving a car and got a job, I could socialize with people and not feel so ashamed of myself.


#15

Hmm… I’m actually not med-compliant. I barely listen to a thing the doctors say anymore either. I’ve had this for 7 years. I do read a lot of in depth psychology and neorology articles thought that I take to heart. I also read a lot about the medications. But yeah, I don’t listen to a thing my doctor tells me. In my opinion they don’t know anything.

There are actual legitimate reasons that we don’t take our meds, mainly the cognitive hit. Its not like we just don’t take them because “not taking meds is a symptom of schizophrenia.”

I’d say the best thing you can do is support your son in all he does and all he thinks and feels. This is better than the alternative because he needs to not be alone in this and feel as if no one is listening to him and denying all credibility that he has. (Imagine if this happened to you, the denying of credibility, you would go even more insane).

See, “unwillingness to take medication” might be a symptom of schizophrenia that comes out of a text book but in truth the are tedious how’s and why’s behind that. And trust me the reasons why we don’t take our meds are so dire that they are actually worth fighting for. They really don’t feel good to be on, ask anyone on this site.

…and if he’s not breaking the law… Then what’s the harm eh? Is my opinion.

This is the only thing I will fight to the death with my mom about. And again, there are real reasons why from our side… Which no one seems to know anything about except us.

Hope that helps :smiley:


#16

When I was in an episode it seemed to me that I was the reasonable party, and everyone else was irrational. My former AA sponsor told me, “You’re not on the beam, and you don’t know you’re not on the beam, because you’re not on the beam.” That’s a very mild description of sz.


#17

Another point I’d like to make, which explains why I can’t take the doctors seriously:

I’ve been diagnosed with schizophrenia for 7 years. However, my symptoms are starting to go away in their entirety now. Yet the catch is that the diagnosis doesn’t magically change until after the symptoms go away… So I will be treated for schizophrenia indefinitely until I am able to successfully come off of medication and be symptom free by my own initiative? Talk about laziness on the part of the medical professionals…

Thank God that’s why we have laws in place that don’t let this sort of thing happen, at least legally.

Hope my thoughts help! And good luck!

:sunglasses:


#18

I am hoping your trip to church isn’t so bad. You sound so kind and express you thoughts so well. It saddens me that you feel so bad about yourself because I think you sound pretty amazing. Good luck today :slight_smile:


#19

It’s unfortunate that you have taken that attitude towards your doctors and medications. When I met and talked to my husband’s psychiatrist the first thing she told me, was the biggest thing people don’t understand about the illness is how intensely the person who has it is suffering. My husband was finally prescribed a medication that helped him. Within the first hour of taking it, he suddenly felt relief. He said that he hadn’t felt that good in years. Once you go off the meds though, you’ll go through a period where you’ll feel better, more clear headed, but then the fog of the illness will take over and as my husband puts it, play tricks on your mind. You’ll relapse. The problem with that, is that every time you relapse you can do damage to your brain, your illness can become more difficult to treat, more med resistant. My sister is a pharmacist that specializes in psychiatry. She said one of the saddest things was to watch people choose to go off their meds, then not be able to relieve their suffering later. I would hate to see that happen to you.


#20

I’m not sure that unwillingness to take medication is a symptom of schizophrenia but rather anosognosia, a condition in which someone who is ill, is unable to see their illness, This is exactly what I’m dealing with right now and he is only getting worse. I have read all over these forums,the success people have had with their meds. Yes, the side effects can be bad, but many seem to choose those side effects to live with rather than the symptoms of schizophrenia which are what these antipsychoitcs are targeted at. A mixture of a low dose of antipsychotics, exercise, amino acids, socialism, and family support are my goals. Getting there is what seems like impossible, but I’ve read about too many success stories to give up. He needs me to fight for him because he can’t.
Not sure if I’m allowed to post my blog, but some could find it relatable.
http://journeythroughpsychosis.com/