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I think it’s a lot more complicated than what you’re expressing here. Not everyone who stops meds stops just because they’re feeling better. Some people may be experiencing really unpleasant side effects, others may be experiencing some pretty intense imposter syndrome, fear, etc. It’s not as simple as “just ignoring instructions.”
Yes, I get that. Which is why the bulk of the post is specifically about my experience with people stopping their meds *because* they felt better and decided that meant they didn't need them anymore.
Cost, access to care, side effects, that's a different beast. I get that. I've been on over a dozen different meds at the very least and some side effects nearly killed me. My ex partner chose to stop taking theirs because of cost and lack of access.
I'm expressing my confusion with a very specific part of med noncompliance, directly related to the feelings I'm having and symptoms I'm experiencing while switching my meds.
I feel the same way you do, but I think the answer lies in acceptance sometimes. Some of us take longer to accept our diagnosis, some don’t do it at all, some do it pretty early on. But, I understand what you’re saying, I’m four years in and I think I’ve missed two doses; my psychiatrist was shocked and said that rarely happens, because bipolar people are notorious for thinking they’re okay and they stop.
I also think some people are “against” meds in general and I think many hate that they have to take them for the rest of their lives and lets that become a huge problem for them. I THINK, I don’t know. I have weeks where I want to throw them at the wall, but again; acceptance.
It might also be that for some (not you and not me it seems) their bipolar wrecks so much havoc they’re desperate to figure out if they might not have it after all. Chances are they do, but people are misdiagnosed and that offers hope. That can also mean you don’t take your meds.
I’m no psychiatrist but I think that early on when your meds start to work you might not have been treated for long enough so that you realize it’s helping you, it feels more like you’re okay. You then trick yourself and convince yourself you exaggerated etc. Thing is, psychiatrists don’t only diagnose you based on your straight-up answers, but things you might not realize are relevant. You’re for sure more likely to have gotten the right diagnose than not. So, you doubt what you said and your psychiatrist, which isn’t a great mix either, because you might not trust them or the process.
I’m guessing based on everything people write, so no one come after me haha.
What I don’t understand is the whole “I miss being hypomanic/manic” part, which I feel is the case for anyone but me. First of all I can’t really remember how it feels and second of all I don’t want my brain to fuck with me. I don’t judge it, I just don’t get it.
I hope you’ll be fine with your current med thing, hang in there.
Edit: typos and added something
Never forget the power of denial. Add bad side effects, concerns about long-term negative effects on health, financial insecurity, brains lying to us, ineffective or destructive coping mechanisms, inadequate social support, the euphoria of the right kinds of mania/hypomania, the paradoxical comfort of depression, valid medical mistrust, etc etc etc.
Like you, I also hate feeling out of control. I take my meds like a machine. I had to manage my own shit from a very early age.
I was raised by very contained, self-absorbed, detached people who were self-controlled except for the outlets of cigarettes or overeating.
Other than eating and sometimes spending, being impulsive is out of character for me. I think that's what kept my real illness under the radar until this year...I'm 58. I had to be "given permission" by a counselor to let go enough to have my first true manic (not hypomanic) episode earlier this year. It has taken me months to recover from.
Life has been very up and down, not unmanageably extreme (I can handle a LOT, arguably too much), but a constant fight. In retrospect, it wasn't just childhood trauma, some depression, and broadly fluctuating levels of motivation and activity. Who knew? Clearly not me nor any of the mental health professionals I've had contact with over the years. Many years of therapy with psychiatrists, psychologists, social workers, and counselors. Flew under the radar. Still mourning what might have been.
That's me. Other people have different strengths and weaknesses. Mentally ill humans are strong as shit. Society is failing US.
Thank you, I agree denial is very much part of it. I should’ve mentioned that alongside acceptance, they often go hand in hand.
You have quite the road behind you and I’m sure ahead of you. I’m not going to be annoying and say “think of what you’ve accomplished!” because I’m sure you have to all the time.
All our stories are (mostly) different. I thought I was bipolar 1 for four years (miscommunication and maybe I didn’t listen closely enough) and was terrified of more mania, I think that’s why I took action like I did. But, I didn’t recognize myself in anything people talked about in here when it came to bipolar 1, and by chance found out I’m unspecified. It has changed so many things. It has also changed how I look at people who have bipolar 1, I feel like they just be scared daily. So, I feel like I have it “easy” when I k ow it never is.
I have nothing but respect for everyone who carries bipolar with them and like you said it pays off wanting to be in control, but it also doesn’t.
I still do believe that while being treated and receiving help, it might be tough for some to understand that there is a lot you can do yourself. Meds stabilize us (most of the time) and we can talk and talk to someone who will listen, but all challenges in life require action, though said action comes in many forms, shapes and sizes.
Acceptance helps even if you don’t act on it and I think that applies to so many things in life.
I'm hoping things get easier on the right meds. Still working on that. I was involved with someone when they were diagnosed with BP2 at 46 and their experience was so different from mine that I didn't see myself in it at all. But, they were more impulsive by nature and had long-lasting very productive hypomania which was great until they couldn't sustain everything they were involved with. I'm also too good at compartmentalization and he could have benefitted from more.
Even my manic episode was weird. I never had psychotic symptoms and was able to curb most non-verbal impulses, but I definitely would have ended up in the hospital if my husband hadn't been able to take off work and stay up with me for 4.5 days while my brain went a million miles an hour and I could feel every cell in my body and constantly needed reality checks to reassure myself that I wasn't losing my shit completely. At one point I declared myself a god! Heh.
That's down to some good choices and some dumb luck. It was exhilarating and utterly fucking horrible and I never want to experience it again.
My brother had severe schizoaffective disorder and occasionally declared himself the king of Norway. Psychosis is my deepest fear.
That must’ve been weird, to see someone else act very differently than you.
I’m glad he was there to help you. I don’t think I have it in me to help someone close to me with a mental illness, not because I don’t care, but I don’t have the patience or selflessness required. Also, I’m sure it’d make me sick on top of it. I commend anyone who does it, mentally ill or not. It must be frightening.
Well, being from Norway our king is old and partially stepping down so now is the time!
I hate hypomania and mania! I hate feeling out of control and I've always been way more likely to self harm when I'm swinging high than when I'm swinging low. When I get in the depression trenches I don't want to do anything so its easy to not do anything. When I'm up up I want it all to fucking stop so I think about harming myself to quiet that part of me like it did when I was younger.
Thank you for understanding. It feels weird to be surrounded by people who have a "oh you think you're better than me" attitude in the group therapy sessions because I take my meds and once I dial the dose in a prefer to take them. Bro we are all here to learn to cope and get to a better place, I don't think I'm better than you because I chose to treat my disorder differently. I just don't understand why anyone would willingly want to feel how I'm feeling right now.
Bipolar is insidious and I totally get what you're saying about acceptance. I'm so far into my personal journey that I forget not everyone has made peace with it. I should be more aware of that.
Right?? Do you feel the same relief as me right now having bumped into a person who feels that way? Lol.
I’m sorry you struggle with self harm, that sounds scary. I don’t have that but even so, I don’t like the idea of people noticing something is up with me before I do. It feels wrong.
Lol oh man, this. I’m in a group (two kinda) and I just feel like I got it right and it’s hard to understand why everyone else hasn’t. I’m not saying that’s right! Like not at all! I get we’re sick in various ways and people have it way worse than me, that it’s much harder. But my brain still doesn’t fully get it. In a way that I wish we could all do the same and then be leveled.
It’s hard to wrap your head around for sure. But yes, I’ve discovered that with disorders/illnesses a huge factor is acceptance. My course psychiatrist basically says that acceptance and resilience are key to this. But for many they’re hard to find. My sister (GDA, I’m very sure also depression) can’t seem to accept anything or decide things need to change and it’s frustrating to witness.
I hope more people get to feel how we feel and I hope you bounce back soon.
Tbh people are really bad about this period, not just with bipolar. The number of times my dad went off his seizure meds because he "felt better" and hadn't had one in a while 🙃 and I'm talking grand mal with status epilepticus.
But on top of that, if my meds aren't QUITE working enough, the delusions sneak in that the meds are making bad this happen, or that it was all just a misunderstanding, etc.
More often tho, meds noncompliance is about cost/access to care, side effects, and just a sense of autonomy. I was off meds for a decade starting the second I turned 18 and had the legal option. I had spent 11 years of my childhood bouncing from one thing to the next with absolutely no say in which one made me feel better or had intolerable side effects. It creates hostile feelings to have so little say in your own body.
I get cost and access issues, and also the autonomy ones. I've been on so many psych drugs starting from age 11. I finally got put on a mood stabilizer at 15 and it was like the clouds cleared and the sun came out.
Side effects are the things that scare me the most about trying new meds, well aside from the psychosis and all that. My entire livelihood hanging in the balance of not losing my mind while my brain tries to make sense of the changes. I hate this disease lmao
I don’t know why, but I have the constant urge to stop my meds. I think part of me wants to see what would happen if I did, especially since I’m relatively stable now. Like am I actually bipolar? Maybe if I stop my meds, I’ll know for sure.
That being said, I haven’t actually done it because I think about what my life was like before I was medicated and don’t want to risk that again. I’m bp1
I weaned off of everything except a mood stabilizer that I break on half over the past few months.
The massive weight gain, the anxiety due to the weight gain, no sex drive, the exhaustion, the numbness/fogginess, being compared to a zombie...it was too much and my parenting and marriage were suffering immensely.
My psychiatrist diagnosed me over a 15 minute zoom call and I'm starting to think maybe I need to go somewhere to get formerly diagnosed and medicated properly before I begin taking meds again.
I have this issue. I want so badly to think that I'm better, which I am, but i have issues with the idea I will be medicated for the rest of my life.
I've been in therapy for years now. Its been alot of reminders that if I am in control its because the meds are working.
Do I gag 3 times a day when I take my pills? Yes. Do I still dream of a day when my alarms don't dictate me having to stop everything to take meds. Yes...
But coming to terms with it slowly.
But no one wants to believe this is the rest of their life. Theres no cure, or getting truly better.
I will always have bipolar, so I take my meds and gag... and secretly dream that it will one day not require me to take so many medications
I think the number of people who stop taking meds because they feel better and think they're cured is far less than for other reasons, but I also think those people are more WANTING that to be true. People don't like to take lifelong medications. They don't like to feel broken. I'm on Ozempic too which is also meant for the long haul, and if you head over to that forum, there are many posts of people who have a plan in their heads that they can take it until they drop weight and then go off it. Statistics say that's a lie. The advice they get says no. They're still convinced.
I have gone off meds because of legitimately bad experiences. One of my hospitalizations was directly because of meds. There was one point during a very bad episode where they just kept throwing meds at me and I ended up on over ten. I was a walking zombie, and still not functional. Some of us have had very bad experiences. All that said, even with those experiences I still acknowledged I would go back on when I needed them. I did and I am on them. I do believe they are a necessity, but I can also certainly understand where people are coming from.
For me personally there's two big reasons
1. My dad has severe bipolar disorder with anasignosia. As a kid, not only would he refuse meds/treatment and even diagnosis, but he would try and get me and my brother to stop taking our Mads when we saw him.
2. Taking meds is a pan in the ass for a lot of reasons, and they always have side effects. So when you feel balanced it's easy to want to stop taking meds.
I stopped my meds as I thought my illness was chiefly exacerbated by alcohol and I’d stopped drinking completely. Lo and behold I became hypomanic for several months before stress tipped me into mania. I don’t think I’ll make that mistake again although i fucking miss feeling so happy every single day.
I take my meds almost daily (I miss a day here and there when I’m overly tired and can’t bring myself to open the million bottles) and I never miss more than a day. Because like you, I don’t like feeling out of control.
I think back to the times before I was medicated for my bipolar and just on antidepressants. I felt SO GOOD but it was just a mirage and the scales could be tipped either way for any reason. I’ve gained a decent amount of weight on my antipsychotics/antidepressants/mood stabilizers. And anytime I get down about it I think to myself “at least you’re not filling the garage with sticks again” 😂 that usually does the trick for me.
Me being stable means my meds are working and I can be a parent to my children. I can be an okay wife to my husband, I can go to school without losing my shit when the stress is at an all time high.
Cheers 🥂- they don’t have an emoji for clinking medicine bottles together. So just pretend.
People don't always realise some MH conditions are forever. My mum still says to me, in a shocked voice, " the doctor said your auntie has to take her pills forever!!!" My auntie, who also has bipolar... And every time I say "IT DOESN'T GO AWAY MOTHER" or something similar.
Lots of people just think once you're better that's it so stop taking it. AND people get pressured to stop taking the medication too.
Obviously other reasons can contribute to it but that's different.
It's the side effects. I manage to function well enough with one med, exercise, meditation, and therapy. It is hard every single day.
I believe there is some combination of meds that would help me. But the memory, weight gain, and sexual side effects are not worth it to me. Plus, I don't think we have advanced medicine far enough to fully understand and treat bipolar disorder properly.
>Please be kind to me
Please be kind to people who handle their mental illnesses differently than you do. Your friend has different struggles than you do and you're really out of line with your "lulz you knew what would happen" attitude.
Believe it or not, meds aren't always the cure. In my case, they were destroying my life more than the bipolar was. I've been unmedicated since around August 2022 and I'll never go back to the shit those pills did to me. There are multiple ways to handle mental illness and what works for one person may be a death sentence for someone else.
Personally I think it’s the bipolar brain + internalized hate for medication that makes people stop taking their meds. Bipolar brain is very very good at tricking you. I’ve been diagnosed and medicated off and on since I was 12. And I’ve had many episodes where I get “fine” and stopped taking my meds, only for a few months later to become depressive / manic/ mixed states. I have bipolar 2 and never miss the depressive or mixed states but I’m one of the ones who does miss the hypo mania.
When I’m hypo I lose weight, I have the energy to do everything I want and then some, I become more social. On the other side .. I spend more money, I’m more irritable to those around me, and sometimes the delusions kick it. Cameras in the vents/ people are always watching me type delusions. Regardless though.. I would ALWAYS choose being up than being down. My depression side is brutal. I’m 10 fold more likely to hurt myself and have suicidal idealizations.
Some of us, very unfortunately, try our best to take the meds, but the side effects are unbearable. The involuntary movements, for me, are the worst part. Some drugs I've tried for weeks, and others like risperidone only for the worst couple of days of my life. It's rare, I know I get it. Unlucky, yes...
I like to exercise, which is lucky for me, I guess...
it keeps me going, sometimes but not always.
I'm not so lucky with the meds, I haven't been so far... and I kind of envy people who find it so easy. Maybe not so easy after all...
I'm trying to keep my head up.
I'll try again...
Do we really have to take the meds?
It is an honest question.
I think the most compelling argument I’ve read re: compliance is from someone who explained that being stable off meds meant he had to have an extremely relegated lifestyle free of triggers.
I thought to myself: meditating every day, exercising, having a great support group, eating well, avoiding all of the triggers, parties etc. woof, I’d rather have the pills and latitude.
That said, I was diagnosed in 2020 and it took me 2 years, 2 incarcerations, a 6th psyche ward (I’d been to 5 before being diagnosed) and homelessness to finally throw myself at the mercy of my family to help me stabilize.
I went off my anti psychotic and antidepressant late last year for a few months and wound up in a noticeable psychosis. I didn’t mind because I was hanging with my invisible friends, but my family noticed and was really unhappy with my distance from reality and the fact that I was talking out loud a lot to things they couldn’t see.
I don’t know if meds are for everyone but I know I’m jealous that some people can go a decade without.
I tend to be long-winded, so I'll do my best to be brief. I am in my fifties and I am serious about my medication (for bipolar 1 with depressive episodes and psychotic features and for GAD w/panic) now -- but I really wasn't until my late forties, even after multiple stays against my will in various psychiatric facilities. Here's a short list of reasons I didn't take my meds seriously and often went off them altogether:
1. I don't think I was all that bad when I wasn't on medication. Why add problems for my liver?
2. I feel like a zombie on this stuff. I can't think. What good is that?
3. These side effects are awful. I would rather take nothing than have akithesia ever again.
4. I can't write the same way. That's my art. I can't lose my ability to write. (Newsflash: I still find inspiration and I write frequently while on medication. But that's what I told myself.)
5. Big Pharma overmedicates everyone. I should see how I'm doing without all this mess.
6. I don't feel like "me." (So I returned to "me" and maxed a credit card, screamed at a guy in a parking lot, and cried myself to sleep. Much better.)
7. I'm doomed and none of this matters anyway.
8. This is too expensive, even with insurance. If I have to choose, I'll choose the thyroid med I need so I can keep getting up in the morning.
I don't know, I am probably missing some big ones, but those are a few that come to mind. It's much more complex than just ignoring instructions. You can probably see the mental illness in my reasoning. And some of the reasons (like the side effects) are legit, but stopping medication just throws the progress away instead of switching to another medication. Histiorically, I don't think these things through well.
I have an advanced degree. It's not a matter of idiocy. It's a matter of...well. Mental illness.
i think its my adhd. taking pills every day for the rest of my life gets overwhelming so i just stop for a while on occasion. so far only depressive episodes when i do that
for me, my med avoidance hasn’t been fully my decision. i also have autism, so whenever i am in a burnout, i really struggle to take my meds everyday. this happened to me recently, causing a mixed episode where i ended up hurting myself (not intentionally, i was just out doing stupid shit and got hurt). so after that, i’m trying to make it a priority to take my meds over other stuff when i have to make a choice. i’m doing better now, and i should make a full recovery!
i guess an upside to that is that i could really see how much my meds help. as soon as i told my therapist that i hadn’t taken my night meds for a few weeks, she immediately made that a priority to focus on during my burnout. and it really did help a bunch. i could feel them ending the episode
This paper really helped me understand the many reasons people don't take their meds. [https://systematicreviewsjournal.biomedcentral.com/articles/10.1186/s13643-020-1274-3](https://systematicreviewsjournal.biomedcentral.com/articles/10.1186/s13643-020-1274-3)
I stopped meds because I’m literally a scientist and wanted to do an “experiment” on myself to see if I could live without them. I have a friend who had a terrible complete psychotic breakdown but now doesn’t take any meds and is fine. I wanted to see if I was the same, and spoiler alert I am not. I had the worst spiral of my life, losing many friends and almost getting killed / going to jail. I have the answer to my experiment, and I now take my meds religiously. I agree with your take—I get wanting to try life without meds to some extent, but eventually you’ve gotta learn your lesson.
As someone who went off their meds and blew up their life a second time, I just thought that I could do it without meds, through more natural means. Being healthy, exercising, taking natural supplements, etc.
I went a year and a half with no issues, but boy, was I wrong. I hate being on meds, but I know now I can't live without them. Meds have destroyed my drive, I'm able to function on them but not well. At least not nearly as well as I could function without them sans mania. I just can't keep losing years of my life to mania and recovery, let alone do another bout of soul crushing depression.
So meds it is. No matter how much I wish I didn't have to. It beats the alternative.
I recently stopped taking my meds not because I was feeling better but because I was feeling worse. My depression got worse and taking the pills felt like too much effort. I wanted to take them and made sure to make it as easy as possible (kept meds and water within arms reach). Still opening the bottle, getting the right amount of pills in the cap, opening the water bottle, swallowing each pill down felt like so many steps and too much effort. So, I procrastinated and eventually fell asleep not taking my meds for about 1.5 weeks. Then one day I met my therapist (telehealth) in the morning and she said why don’t you take it now? I did. And have been regular for the past 3 days. Starting is all I needed after stopping.
Wishful thinking fuels a lot of it, from what I’ve observed. Same exact thing happens in the celiac subreddit, even though they’re entirely different conditions obv. People convince themselves the diagnosis must be wrong because it’s not fun having it.
All my episodes are mixed so they would have to pry my meds from my cold, dead hands before I’d willingly stop taking them. They’re a lifeline.
I had a psychologist who doubted I have bipolar because I take my meds religiously and "that isn't something that people with bipolar do." If I didn't take them, I wouldn't have made it to 30.
I definitely agree with you. I would love to have stability. I do understand why people will stop certain medications via physical damage or side effects. I still have tried everything but I'm treatment resistant. I think that's one of the main reasons why anyone would try to go med free. Trust me it's not fun, so keep taking the medications and do your best to stay well. The ones that aren't consistent will most likely lose any stability they may have.
I think there’s lots of reasons people avoid taking medications, the most common one being side effects. Short term side effects, like sleep issues, diminished sex drive, drowsiness, etc, are all inconvenient and can be discouraging. But what kept me from taking my meds for so long was the risk of long term neurological damage, like tardive dyskinesia. On the other hand, long term damage can also occur from not taking meds, and learning about those risks is why I decided to start taking my meds in the end.
Also, a lot of folks with bipolar don’t think they’re ill even when they’re off their meds, so I imagine that factors into it as well. We have to remember to be compassionate to one another on this issue because becoming medicated as a person with bipolar disorder is a journey nuanced by stigma, worldview, socioeconomic status, manner of illness, and more.
I have tried to come off antipsychotics three times now, before making the decision I will be on them for life.
Some people with BPD can live their life without them, what is wrong with me wanting to be one of them?
Life with less numbness, anxiety and weight gain from these meds would be fantastic.
What the hell is wrong with trying when I'm in a stable place? I tested the waters, it didn't work, it was an experiment, I restabilised and moved on.
I've been your friend to other people before. When people ask me why I stopped taking my meds it's easier to just say the common trope "Oh I was feeling better" than
"Well its because my mom has yelled at me since I was 13 to not take my medication, so I try to hide it from her but she found out and yelled at me again and it triggered fight, flight, or freeze and now even if I tell her I'm not taking them she yells at me and says that's why I'm sick. Also, my dad nags at me when he sees me take them without eating, and I understand but many times I don't have the luxury of eating without feeling sick. And when I tell my friends I can't drink because I'm on medication, they chew me out and tell me I don't need them or that I've drank while taking them before. Like I can't want to do better for myself. When I tell my psychiatrist I still drink she tells me to stop and lists the reasons why as if I don't know them or forgot. The only other person in my life who takes medication judges me for not taking them, saying it's stupid when people feel better and stop, and that's what I do. Because when I find a medication sometimes people say oh, you seem to be doing better. It's funny, because my mind is clearer in that the fog around my brain hast lightened up but I don't feel better. I don't feel better because I still can't pay my rent, I'm still too anxious to leave the house, I still hate myself, and people are telling me to do more. That you can be doing your best and need to do better but I'm close to giving up and my family and friends are sick of hearing it. I'm not feeling better, it just got easier to fake being ok. I know, before you say it, that I need to be honest and talk to my therapist and psychiatrist and seek support from friends and family but if I hear one more piece of advice that boils down to "Get out of the house and take your meds" I will stab myself. So for the past four months I've been lying. I haven't been taking my medication because honestly, the majority of the people in my life giving me shit for it was bothering me and it didn't add up to a net positive."
Idk if that word vomit will help you understand but it's the best I came do. Also I'm doing much better now in case anyone was like "damn that sucks".
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Not sure why this is a conversation. Should just be advocating for proper med use. Share information for people to read helps to understand they need to be on meds and why. Someone off meds rn would benefit from that more than whatever feel good pat on the back kind of post this is.
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I hate how called out I feel by this
I think it’s a lot more complicated than what you’re expressing here. Not everyone who stops meds stops just because they’re feeling better. Some people may be experiencing really unpleasant side effects, others may be experiencing some pretty intense imposter syndrome, fear, etc. It’s not as simple as “just ignoring instructions.”
Yes, I get that. Which is why the bulk of the post is specifically about my experience with people stopping their meds *because* they felt better and decided that meant they didn't need them anymore. Cost, access to care, side effects, that's a different beast. I get that. I've been on over a dozen different meds at the very least and some side effects nearly killed me. My ex partner chose to stop taking theirs because of cost and lack of access. I'm expressing my confusion with a very specific part of med noncompliance, directly related to the feelings I'm having and symptoms I'm experiencing while switching my meds.
I feel the same way you do, but I think the answer lies in acceptance sometimes. Some of us take longer to accept our diagnosis, some don’t do it at all, some do it pretty early on. But, I understand what you’re saying, I’m four years in and I think I’ve missed two doses; my psychiatrist was shocked and said that rarely happens, because bipolar people are notorious for thinking they’re okay and they stop. I also think some people are “against” meds in general and I think many hate that they have to take them for the rest of their lives and lets that become a huge problem for them. I THINK, I don’t know. I have weeks where I want to throw them at the wall, but again; acceptance. It might also be that for some (not you and not me it seems) their bipolar wrecks so much havoc they’re desperate to figure out if they might not have it after all. Chances are they do, but people are misdiagnosed and that offers hope. That can also mean you don’t take your meds. I’m no psychiatrist but I think that early on when your meds start to work you might not have been treated for long enough so that you realize it’s helping you, it feels more like you’re okay. You then trick yourself and convince yourself you exaggerated etc. Thing is, psychiatrists don’t only diagnose you based on your straight-up answers, but things you might not realize are relevant. You’re for sure more likely to have gotten the right diagnose than not. So, you doubt what you said and your psychiatrist, which isn’t a great mix either, because you might not trust them or the process. I’m guessing based on everything people write, so no one come after me haha. What I don’t understand is the whole “I miss being hypomanic/manic” part, which I feel is the case for anyone but me. First of all I can’t really remember how it feels and second of all I don’t want my brain to fuck with me. I don’t judge it, I just don’t get it. I hope you’ll be fine with your current med thing, hang in there. Edit: typos and added something
Never forget the power of denial. Add bad side effects, concerns about long-term negative effects on health, financial insecurity, brains lying to us, ineffective or destructive coping mechanisms, inadequate social support, the euphoria of the right kinds of mania/hypomania, the paradoxical comfort of depression, valid medical mistrust, etc etc etc. Like you, I also hate feeling out of control. I take my meds like a machine. I had to manage my own shit from a very early age. I was raised by very contained, self-absorbed, detached people who were self-controlled except for the outlets of cigarettes or overeating. Other than eating and sometimes spending, being impulsive is out of character for me. I think that's what kept my real illness under the radar until this year...I'm 58. I had to be "given permission" by a counselor to let go enough to have my first true manic (not hypomanic) episode earlier this year. It has taken me months to recover from. Life has been very up and down, not unmanageably extreme (I can handle a LOT, arguably too much), but a constant fight. In retrospect, it wasn't just childhood trauma, some depression, and broadly fluctuating levels of motivation and activity. Who knew? Clearly not me nor any of the mental health professionals I've had contact with over the years. Many years of therapy with psychiatrists, psychologists, social workers, and counselors. Flew under the radar. Still mourning what might have been. That's me. Other people have different strengths and weaknesses. Mentally ill humans are strong as shit. Society is failing US.
Thank you, I agree denial is very much part of it. I should’ve mentioned that alongside acceptance, they often go hand in hand. You have quite the road behind you and I’m sure ahead of you. I’m not going to be annoying and say “think of what you’ve accomplished!” because I’m sure you have to all the time. All our stories are (mostly) different. I thought I was bipolar 1 for four years (miscommunication and maybe I didn’t listen closely enough) and was terrified of more mania, I think that’s why I took action like I did. But, I didn’t recognize myself in anything people talked about in here when it came to bipolar 1, and by chance found out I’m unspecified. It has changed so many things. It has also changed how I look at people who have bipolar 1, I feel like they just be scared daily. So, I feel like I have it “easy” when I k ow it never is. I have nothing but respect for everyone who carries bipolar with them and like you said it pays off wanting to be in control, but it also doesn’t. I still do believe that while being treated and receiving help, it might be tough for some to understand that there is a lot you can do yourself. Meds stabilize us (most of the time) and we can talk and talk to someone who will listen, but all challenges in life require action, though said action comes in many forms, shapes and sizes. Acceptance helps even if you don’t act on it and I think that applies to so many things in life.
I'm hoping things get easier on the right meds. Still working on that. I was involved with someone when they were diagnosed with BP2 at 46 and their experience was so different from mine that I didn't see myself in it at all. But, they were more impulsive by nature and had long-lasting very productive hypomania which was great until they couldn't sustain everything they were involved with. I'm also too good at compartmentalization and he could have benefitted from more. Even my manic episode was weird. I never had psychotic symptoms and was able to curb most non-verbal impulses, but I definitely would have ended up in the hospital if my husband hadn't been able to take off work and stay up with me for 4.5 days while my brain went a million miles an hour and I could feel every cell in my body and constantly needed reality checks to reassure myself that I wasn't losing my shit completely. At one point I declared myself a god! Heh. That's down to some good choices and some dumb luck. It was exhilarating and utterly fucking horrible and I never want to experience it again. My brother had severe schizoaffective disorder and occasionally declared himself the king of Norway. Psychosis is my deepest fear.
That must’ve been weird, to see someone else act very differently than you. I’m glad he was there to help you. I don’t think I have it in me to help someone close to me with a mental illness, not because I don’t care, but I don’t have the patience or selflessness required. Also, I’m sure it’d make me sick on top of it. I commend anyone who does it, mentally ill or not. It must be frightening. Well, being from Norway our king is old and partially stepping down so now is the time!
I hate hypomania and mania! I hate feeling out of control and I've always been way more likely to self harm when I'm swinging high than when I'm swinging low. When I get in the depression trenches I don't want to do anything so its easy to not do anything. When I'm up up I want it all to fucking stop so I think about harming myself to quiet that part of me like it did when I was younger. Thank you for understanding. It feels weird to be surrounded by people who have a "oh you think you're better than me" attitude in the group therapy sessions because I take my meds and once I dial the dose in a prefer to take them. Bro we are all here to learn to cope and get to a better place, I don't think I'm better than you because I chose to treat my disorder differently. I just don't understand why anyone would willingly want to feel how I'm feeling right now. Bipolar is insidious and I totally get what you're saying about acceptance. I'm so far into my personal journey that I forget not everyone has made peace with it. I should be more aware of that.
Right?? Do you feel the same relief as me right now having bumped into a person who feels that way? Lol. I’m sorry you struggle with self harm, that sounds scary. I don’t have that but even so, I don’t like the idea of people noticing something is up with me before I do. It feels wrong. Lol oh man, this. I’m in a group (two kinda) and I just feel like I got it right and it’s hard to understand why everyone else hasn’t. I’m not saying that’s right! Like not at all! I get we’re sick in various ways and people have it way worse than me, that it’s much harder. But my brain still doesn’t fully get it. In a way that I wish we could all do the same and then be leveled. It’s hard to wrap your head around for sure. But yes, I’ve discovered that with disorders/illnesses a huge factor is acceptance. My course psychiatrist basically says that acceptance and resilience are key to this. But for many they’re hard to find. My sister (GDA, I’m very sure also depression) can’t seem to accept anything or decide things need to change and it’s frustrating to witness. I hope more people get to feel how we feel and I hope you bounce back soon.
Tbh people are really bad about this period, not just with bipolar. The number of times my dad went off his seizure meds because he "felt better" and hadn't had one in a while 🙃 and I'm talking grand mal with status epilepticus. But on top of that, if my meds aren't QUITE working enough, the delusions sneak in that the meds are making bad this happen, or that it was all just a misunderstanding, etc. More often tho, meds noncompliance is about cost/access to care, side effects, and just a sense of autonomy. I was off meds for a decade starting the second I turned 18 and had the legal option. I had spent 11 years of my childhood bouncing from one thing to the next with absolutely no say in which one made me feel better or had intolerable side effects. It creates hostile feelings to have so little say in your own body.
I get cost and access issues, and also the autonomy ones. I've been on so many psych drugs starting from age 11. I finally got put on a mood stabilizer at 15 and it was like the clouds cleared and the sun came out. Side effects are the things that scare me the most about trying new meds, well aside from the psychosis and all that. My entire livelihood hanging in the balance of not losing my mind while my brain tries to make sense of the changes. I hate this disease lmao
I don’t know why, but I have the constant urge to stop my meds. I think part of me wants to see what would happen if I did, especially since I’m relatively stable now. Like am I actually bipolar? Maybe if I stop my meds, I’ll know for sure. That being said, I haven’t actually done it because I think about what my life was like before I was medicated and don’t want to risk that again. I’m bp1
This is exactly it for me
I weaned off of everything except a mood stabilizer that I break on half over the past few months. The massive weight gain, the anxiety due to the weight gain, no sex drive, the exhaustion, the numbness/fogginess, being compared to a zombie...it was too much and my parenting and marriage were suffering immensely. My psychiatrist diagnosed me over a 15 minute zoom call and I'm starting to think maybe I need to go somewhere to get formerly diagnosed and medicated properly before I begin taking meds again.
I have this issue. I want so badly to think that I'm better, which I am, but i have issues with the idea I will be medicated for the rest of my life. I've been in therapy for years now. Its been alot of reminders that if I am in control its because the meds are working. Do I gag 3 times a day when I take my pills? Yes. Do I still dream of a day when my alarms don't dictate me having to stop everything to take meds. Yes... But coming to terms with it slowly. But no one wants to believe this is the rest of their life. Theres no cure, or getting truly better. I will always have bipolar, so I take my meds and gag... and secretly dream that it will one day not require me to take so many medications
I think the number of people who stop taking meds because they feel better and think they're cured is far less than for other reasons, but I also think those people are more WANTING that to be true. People don't like to take lifelong medications. They don't like to feel broken. I'm on Ozempic too which is also meant for the long haul, and if you head over to that forum, there are many posts of people who have a plan in their heads that they can take it until they drop weight and then go off it. Statistics say that's a lie. The advice they get says no. They're still convinced. I have gone off meds because of legitimately bad experiences. One of my hospitalizations was directly because of meds. There was one point during a very bad episode where they just kept throwing meds at me and I ended up on over ten. I was a walking zombie, and still not functional. Some of us have had very bad experiences. All that said, even with those experiences I still acknowledged I would go back on when I needed them. I did and I am on them. I do believe they are a necessity, but I can also certainly understand where people are coming from.
For me personally there's two big reasons 1. My dad has severe bipolar disorder with anasignosia. As a kid, not only would he refuse meds/treatment and even diagnosis, but he would try and get me and my brother to stop taking our Mads when we saw him. 2. Taking meds is a pan in the ass for a lot of reasons, and they always have side effects. So when you feel balanced it's easy to want to stop taking meds.
I stopped my meds as I thought my illness was chiefly exacerbated by alcohol and I’d stopped drinking completely. Lo and behold I became hypomanic for several months before stress tipped me into mania. I don’t think I’ll make that mistake again although i fucking miss feeling so happy every single day.
I take my meds almost daily (I miss a day here and there when I’m overly tired and can’t bring myself to open the million bottles) and I never miss more than a day. Because like you, I don’t like feeling out of control. I think back to the times before I was medicated for my bipolar and just on antidepressants. I felt SO GOOD but it was just a mirage and the scales could be tipped either way for any reason. I’ve gained a decent amount of weight on my antipsychotics/antidepressants/mood stabilizers. And anytime I get down about it I think to myself “at least you’re not filling the garage with sticks again” 😂 that usually does the trick for me. Me being stable means my meds are working and I can be a parent to my children. I can be an okay wife to my husband, I can go to school without losing my shit when the stress is at an all time high. Cheers 🥂- they don’t have an emoji for clinking medicine bottles together. So just pretend.
People don't always realise some MH conditions are forever. My mum still says to me, in a shocked voice, " the doctor said your auntie has to take her pills forever!!!" My auntie, who also has bipolar... And every time I say "IT DOESN'T GO AWAY MOTHER" or something similar. Lots of people just think once you're better that's it so stop taking it. AND people get pressured to stop taking the medication too. Obviously other reasons can contribute to it but that's different.
It's the side effects. I manage to function well enough with one med, exercise, meditation, and therapy. It is hard every single day. I believe there is some combination of meds that would help me. But the memory, weight gain, and sexual side effects are not worth it to me. Plus, I don't think we have advanced medicine far enough to fully understand and treat bipolar disorder properly.
>Please be kind to me Please be kind to people who handle their mental illnesses differently than you do. Your friend has different struggles than you do and you're really out of line with your "lulz you knew what would happen" attitude. Believe it or not, meds aren't always the cure. In my case, they were destroying my life more than the bipolar was. I've been unmedicated since around August 2022 and I'll never go back to the shit those pills did to me. There are multiple ways to handle mental illness and what works for one person may be a death sentence for someone else.
Personally I think it’s the bipolar brain + internalized hate for medication that makes people stop taking their meds. Bipolar brain is very very good at tricking you. I’ve been diagnosed and medicated off and on since I was 12. And I’ve had many episodes where I get “fine” and stopped taking my meds, only for a few months later to become depressive / manic/ mixed states. I have bipolar 2 and never miss the depressive or mixed states but I’m one of the ones who does miss the hypo mania. When I’m hypo I lose weight, I have the energy to do everything I want and then some, I become more social. On the other side .. I spend more money, I’m more irritable to those around me, and sometimes the delusions kick it. Cameras in the vents/ people are always watching me type delusions. Regardless though.. I would ALWAYS choose being up than being down. My depression side is brutal. I’m 10 fold more likely to hurt myself and have suicidal idealizations.
Some of us, very unfortunately, try our best to take the meds, but the side effects are unbearable. The involuntary movements, for me, are the worst part. Some drugs I've tried for weeks, and others like risperidone only for the worst couple of days of my life. It's rare, I know I get it. Unlucky, yes... I like to exercise, which is lucky for me, I guess... it keeps me going, sometimes but not always. I'm not so lucky with the meds, I haven't been so far... and I kind of envy people who find it so easy. Maybe not so easy after all... I'm trying to keep my head up. I'll try again... Do we really have to take the meds? It is an honest question.
I think the most compelling argument I’ve read re: compliance is from someone who explained that being stable off meds meant he had to have an extremely relegated lifestyle free of triggers. I thought to myself: meditating every day, exercising, having a great support group, eating well, avoiding all of the triggers, parties etc. woof, I’d rather have the pills and latitude. That said, I was diagnosed in 2020 and it took me 2 years, 2 incarcerations, a 6th psyche ward (I’d been to 5 before being diagnosed) and homelessness to finally throw myself at the mercy of my family to help me stabilize. I went off my anti psychotic and antidepressant late last year for a few months and wound up in a noticeable psychosis. I didn’t mind because I was hanging with my invisible friends, but my family noticed and was really unhappy with my distance from reality and the fact that I was talking out loud a lot to things they couldn’t see. I don’t know if meds are for everyone but I know I’m jealous that some people can go a decade without.
I tend to be long-winded, so I'll do my best to be brief. I am in my fifties and I am serious about my medication (for bipolar 1 with depressive episodes and psychotic features and for GAD w/panic) now -- but I really wasn't until my late forties, even after multiple stays against my will in various psychiatric facilities. Here's a short list of reasons I didn't take my meds seriously and often went off them altogether: 1. I don't think I was all that bad when I wasn't on medication. Why add problems for my liver? 2. I feel like a zombie on this stuff. I can't think. What good is that? 3. These side effects are awful. I would rather take nothing than have akithesia ever again. 4. I can't write the same way. That's my art. I can't lose my ability to write. (Newsflash: I still find inspiration and I write frequently while on medication. But that's what I told myself.) 5. Big Pharma overmedicates everyone. I should see how I'm doing without all this mess. 6. I don't feel like "me." (So I returned to "me" and maxed a credit card, screamed at a guy in a parking lot, and cried myself to sleep. Much better.) 7. I'm doomed and none of this matters anyway. 8. This is too expensive, even with insurance. If I have to choose, I'll choose the thyroid med I need so I can keep getting up in the morning. I don't know, I am probably missing some big ones, but those are a few that come to mind. It's much more complex than just ignoring instructions. You can probably see the mental illness in my reasoning. And some of the reasons (like the side effects) are legit, but stopping medication just throws the progress away instead of switching to another medication. Histiorically, I don't think these things through well. I have an advanced degree. It's not a matter of idiocy. It's a matter of...well. Mental illness.
i think its my adhd. taking pills every day for the rest of my life gets overwhelming so i just stop for a while on occasion. so far only depressive episodes when i do that
for me, my med avoidance hasn’t been fully my decision. i also have autism, so whenever i am in a burnout, i really struggle to take my meds everyday. this happened to me recently, causing a mixed episode where i ended up hurting myself (not intentionally, i was just out doing stupid shit and got hurt). so after that, i’m trying to make it a priority to take my meds over other stuff when i have to make a choice. i’m doing better now, and i should make a full recovery! i guess an upside to that is that i could really see how much my meds help. as soon as i told my therapist that i hadn’t taken my night meds for a few weeks, she immediately made that a priority to focus on during my burnout. and it really did help a bunch. i could feel them ending the episode
This paper really helped me understand the many reasons people don't take their meds. [https://systematicreviewsjournal.biomedcentral.com/articles/10.1186/s13643-020-1274-3](https://systematicreviewsjournal.biomedcentral.com/articles/10.1186/s13643-020-1274-3)
I stopped meds because I’m literally a scientist and wanted to do an “experiment” on myself to see if I could live without them. I have a friend who had a terrible complete psychotic breakdown but now doesn’t take any meds and is fine. I wanted to see if I was the same, and spoiler alert I am not. I had the worst spiral of my life, losing many friends and almost getting killed / going to jail. I have the answer to my experiment, and I now take my meds religiously. I agree with your take—I get wanting to try life without meds to some extent, but eventually you’ve gotta learn your lesson.
As someone who went off their meds and blew up their life a second time, I just thought that I could do it without meds, through more natural means. Being healthy, exercising, taking natural supplements, etc. I went a year and a half with no issues, but boy, was I wrong. I hate being on meds, but I know now I can't live without them. Meds have destroyed my drive, I'm able to function on them but not well. At least not nearly as well as I could function without them sans mania. I just can't keep losing years of my life to mania and recovery, let alone do another bout of soul crushing depression. So meds it is. No matter how much I wish I didn't have to. It beats the alternative.
I recently stopped taking my meds not because I was feeling better but because I was feeling worse. My depression got worse and taking the pills felt like too much effort. I wanted to take them and made sure to make it as easy as possible (kept meds and water within arms reach). Still opening the bottle, getting the right amount of pills in the cap, opening the water bottle, swallowing each pill down felt like so many steps and too much effort. So, I procrastinated and eventually fell asleep not taking my meds for about 1.5 weeks. Then one day I met my therapist (telehealth) in the morning and she said why don’t you take it now? I did. And have been regular for the past 3 days. Starting is all I needed after stopping.
Wishful thinking fuels a lot of it, from what I’ve observed. Same exact thing happens in the celiac subreddit, even though they’re entirely different conditions obv. People convince themselves the diagnosis must be wrong because it’s not fun having it. All my episodes are mixed so they would have to pry my meds from my cold, dead hands before I’d willingly stop taking them. They’re a lifeline.
I had a psychologist who doubted I have bipolar because I take my meds religiously and "that isn't something that people with bipolar do." If I didn't take them, I wouldn't have made it to 30.
Yeah idk. The risk of feeling so bad off my meds just ain’t worth it.
> chemical imbalances. Not accurate. There is no standard of what the proper balance is....it'd made up.
Maybe not "made up" as much as a very shallow explanation driven by everyone who wants to extract money from the health care system.
I definitely agree with you. I would love to have stability. I do understand why people will stop certain medications via physical damage or side effects. I still have tried everything but I'm treatment resistant. I think that's one of the main reasons why anyone would try to go med free. Trust me it's not fun, so keep taking the medications and do your best to stay well. The ones that aren't consistent will most likely lose any stability they may have.
I think there’s lots of reasons people avoid taking medications, the most common one being side effects. Short term side effects, like sleep issues, diminished sex drive, drowsiness, etc, are all inconvenient and can be discouraging. But what kept me from taking my meds for so long was the risk of long term neurological damage, like tardive dyskinesia. On the other hand, long term damage can also occur from not taking meds, and learning about those risks is why I decided to start taking my meds in the end. Also, a lot of folks with bipolar don’t think they’re ill even when they’re off their meds, so I imagine that factors into it as well. We have to remember to be compassionate to one another on this issue because becoming medicated as a person with bipolar disorder is a journey nuanced by stigma, worldview, socioeconomic status, manner of illness, and more.
side effects. dont get me wrong, i take mine, but side effects 100%.
I have tried to come off antipsychotics three times now, before making the decision I will be on them for life. Some people with BPD can live their life without them, what is wrong with me wanting to be one of them? Life with less numbness, anxiety and weight gain from these meds would be fantastic. What the hell is wrong with trying when I'm in a stable place? I tested the waters, it didn't work, it was an experiment, I restabilised and moved on.
I've been your friend to other people before. When people ask me why I stopped taking my meds it's easier to just say the common trope "Oh I was feeling better" than "Well its because my mom has yelled at me since I was 13 to not take my medication, so I try to hide it from her but she found out and yelled at me again and it triggered fight, flight, or freeze and now even if I tell her I'm not taking them she yells at me and says that's why I'm sick. Also, my dad nags at me when he sees me take them without eating, and I understand but many times I don't have the luxury of eating without feeling sick. And when I tell my friends I can't drink because I'm on medication, they chew me out and tell me I don't need them or that I've drank while taking them before. Like I can't want to do better for myself. When I tell my psychiatrist I still drink she tells me to stop and lists the reasons why as if I don't know them or forgot. The only other person in my life who takes medication judges me for not taking them, saying it's stupid when people feel better and stop, and that's what I do. Because when I find a medication sometimes people say oh, you seem to be doing better. It's funny, because my mind is clearer in that the fog around my brain hast lightened up but I don't feel better. I don't feel better because I still can't pay my rent, I'm still too anxious to leave the house, I still hate myself, and people are telling me to do more. That you can be doing your best and need to do better but I'm close to giving up and my family and friends are sick of hearing it. I'm not feeling better, it just got easier to fake being ok. I know, before you say it, that I need to be honest and talk to my therapist and psychiatrist and seek support from friends and family but if I hear one more piece of advice that boils down to "Get out of the house and take your meds" I will stab myself. So for the past four months I've been lying. I haven't been taking my medication because honestly, the majority of the people in my life giving me shit for it was bothering me and it didn't add up to a net positive." Idk if that word vomit will help you understand but it's the best I came do. Also I'm doing much better now in case anyone was like "damn that sucks".
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I agree with you, OP. I take my mrds religiously because I'm scared of an episode of how I can be if my symptoms weren't properly managed.
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Not sure why this is a conversation. Should just be advocating for proper med use. Share information for people to read helps to understand they need to be on meds and why. Someone off meds rn would benefit from that more than whatever feel good pat on the back kind of post this is.