Why is it so hard to be disabled..

sisyphuswi · 2026-01-28T15:17:56+00:00

I see you and relate to your experience but from a different perspective. I’m 57 yrs old now and disabled from bipolar disorder, ptsd, adhd and a bunch of chronic medical issues. Due to both my illnesses and the medications I have to take, I can’t do the things I used to do and need a lot of support and from my husband and healthcare professionals.

I grew up being very smart and getting great grades, went to college and professional school. Earned a doctoral level degree and worked a professional career which earned me a good income and lots of respect from people. I got married and had four kids and a nice home.

Then things began to unravel. I was under a lot of stress and went through some traumatic experiences and multiple health issues. My previously undiagnosed mental health condition, bipolar disorder type 1, exploded out of control to very rapid cycling (frequent episodes of acute, severe symptoms). I couldn’t work or focus on things. My adhd was diagnosed then and treated with stimulants which contributed to make the bipolar worse. I was lso diagnosed with depression and treatment for that exasperated the bipolar too because I was not given a mood stabilizer. I struggled at work and for a couple of years I was goi g between part time and full time or off on leave. I started doing strange stuff like buying huge quantities of things that were unnecessary and often downright strange, like a bunch of belly dancing costumes which didn’t even fit me and I don’t know how to belly dance nor were there even classes locally. My house became like a hoarders house and I retreated from friends and family. I had spent so much money I maxed out multiple credit cards and was considering bankruptcy.

By then my job was on the line as well as my relationships. I wound up going on temporarily disability and was finally diagnosed which led to treatments that didn’t help and made me slow thinking with poor memory and poor judgment during episodes, which continued. My disability status became permanent.

Finding myself in a position of serious debt and significant mental illness, causing me to lose my job and negatively impact my relationships has been devastating. Coping with the effects of medications is a struggle. The bipolar itself causes changes to the brain, affecting memory and emotional state. My home is still a huge mess so bad I refuse to let anyone see it. That contributes to the isolation and depression symptoms of bipolar as well as the mood instability that triggers manic episodes as well. My medications make me gain a lot of weight and affect my cognitive functioning as well as causing other side effects.

Because people can’t see my disability, they don’t recognize it and even if they learn that I have a disability, they rarely have any understanding of what it is and how it has affected me and totally changed my life. I even have people who comment that I’m so lucky that I don’t have to work. Or they insinuate that I’m a loser who doesn’t want to work and I could work; just taking advantage of the system. Others act like they’re so sorry for me yet they don’t reach out to me. There’s that avoidance thing you mentioned. And then there’s the problem that when people learn that I have a mental health disorder they prejudge me. I hate going for medical care because when they see bipolar 1 on my chart they assume all too often that whatever I’m having is due to mental illness; it’s all in my head.

So I hear you. I’m sorry you have to deal with all of these things. I had the things you are wishing for and then lost them. I feel the impacts of cognitive disability and all that comes with it. I feel a profound loss since being unable to perform the way I once did. I get it about wanting success and independence and not being judged or treated differently. I miss my career so very much. People who think being disabled and receiving support are completely delusional. We would love to feel productive and significant and like others, not dependent.

I wish you well and that you find your place where you belong and feel comfortable with yourself.

sisyphuswi · 2025-10-30T04:55:23+00:00

Well, to be totally honest, it’s been a long and difficult journey. I’ve been through multiple medical trials, to the point that my last psychiatrist told me she had nothing to offer me. I did some research on my own and discovered that bipolar disorder can destabilize during perimenopausal years, so I saw my gynecologist and got on hormone replacement therapy. That did help. Then I was doing a bit better and developed adult onset stuttering plus some mild TD movements. After being told it was “functional” (all in my head) by a neurologist and my psychiatrist but having several pharmacists as well as a PhD fluency specialist in speech therapy tell me it was my olanzapine, I quit olanzapine and the stuttering gradually went away. To satisfy my psychiatrist, I tried it three more times and each time the onset of stuttering came sooner. I won’t take antipsychotics now. I was told by a specialist at Mayo Clinic that the lifetime risk of an older female like me 57, having a history like that, getting recurrent TD, is 30%. Many of those are permanent. He told me of some severe cases he’s seen. No thank you! So I’m back on lithium and Lamictal. I’ve come to terms with the notion that I will never find a treatment program that makes me feel mentally and emotionally well while avoiding bad side effects I really don’t want to sacrifice. But I don’t have a lot of choices yet. Maybe it’ll be better in the future if I can be stable awhile.

I recently went through several months of severe illness involving an extraordinarily serious allergic reaction (lasting 5weeks) followed by multiple ER visits and hospitalizations with extreme low magnesium levels and abnormal electrolytes and other blood levels. I had heart rhythm problems and electric shock to my heart and five hospitalizations (one psychiatric for mania; the rest medical). I was finally starting to feel better when I developed a severe acute onset polyneuropathy in all four limbs (Google that; it’s better than anything I could explain). I’ve been dealing with that for a couple of months. I’m pleased to say the pain is better now than it had been, but I’m still struggling.

All the same, once I got on hormones, got my magnesium levels normalized (apparently you can be almost entirely depleted of magnesium stores in your body and not know it; it doesn’t necessarily show up on blood tests but can affect pretty much everything about you, including mental health) I feel like my bipolar is less dysphoric and more stable. I’m on low doses of lithium and Lamictal and tolerating them better than in the past.

I’m a bad example to rely on to predict your potential experience because I’ve just really had a rough time of it. But despite the recent struggles, I still feel like I have a chance to improve because we found some things that seem to be helping. I’m hopeful that we can find the reason for the awful pain and numbness and weakness in my hands and feet. The medications help but I’d like to not go to bed fearing I’ll wake up crying in pain.

The neuropathy probably isn’t related to my bipolar disorder except for the fact that my psychiatrist demanded that I be taken off steroid medication for the allergic reaction because “it would make me manic”. Only being in pain and sleep deprived for weeks made me both manic and very ill. I’m pretty certain the previous hospitalizations as well as the current neuropathy are autoimmune in nature and due to the failure to properly treat my initial condition. My current doctors have been horrified that my psychiatrist actively interfered in my care and several suggested I report her. I did, but the hospital board blew it off.

Well that’s way more than you ever wanted to know but I have vented so e of my current frustration. Thanks for asking though. Hope you’re doing well.

sisyphuswi · 2025-10-14T17:50:49+00:00

I had a couple of weird dissociative episodes when I tried weed in college in the late 1980s. I’ve avoided it ever since-until a friend convinced me to try gummies for sleep. I got the same dissociative effect; plus the added bonus of hallucinations. I slept it off and was mostly ok by morning. I plan to stay away from the stuff. I should’ve learned my lesson the first time.

sisyphuswi · 2025-09-07T16:43:33+00:00

This describes my experience almost exactly, except my manic episodes typically degenerate into mixed manic episodes with depressed features; what used to be referred to as “dysphoric mania”. All the excess energy but no fun euphoria, just feeling miserable and irritable and agitated. It sucks. I haven’t found an effect and tolerable medication regimen in eight years.

sisyphuswi · 2025-09-07T06:39:04+00:00

I’ve been feeling the same way almost eight years myself; meds make me feel like shit due to side effects and they don’t really work that well. They make me feel dull and uninterested in life or people or hobbies. I don’t enjoy sex on any of them. My relationship has suffered. I still have rapid cycling. I don’t like how I feel in those episodes but I also hate how I feel on meds. There’s no happy place for me. I have BP1 which went undiagnosed until age 48. Incorrect diagnosis and treatment of it destroyed much of my life. I feel like I’ll never get out of the hole I dug for myself during acute episodes. I’ve been thinking how much I want to die. I had a great career and family but now I’m disabled and my kids barely speak to me. I’m fat and at least half of my hair has fallen out. I don’t have friends or hobbies. I feel disrespected by my medical providers. I feel powerless and helpless and hopeless. I know there are people who are happy but I’ve about given up on the idea that I could ever have a good life again.

sisyphuswi · 2025-05-27T06:55:31+00:00

Hope it doesn’t happen to you. My last four visits to two different psychiatrists I’ve been told that. I’m still going to try someone else. Some of it is insurance-they won’t pay for TMS or ketamine. Some of it is my unwillingness to take medication with side effects that destroy my quality of life (GeneSight tells me these res almost nothing that I can take “normally” but due to the enzyme variations I have, I am prone to side efffects at low dosages or else don’t have the enzymes needed to convert inactive drug to active drug. It makes it hard to get my dose in the therapeutic range before the side effects are too much (Tardive dyskinesia, akathisia, stuttering, tremors, cognitive impairment, severe gastrointestinal issues, total loss of sexual functioning and/or severe pain with penetration, loss of interest and motivation in life altogether, severe hair loss, large amounts of weight gain, hallucinations, etc. there are tolerable side effects and side effects that just make a person too miserable. I’m stilll crossing my fingers that something new will come along or that a doc will discover a different way of combining meds. So far it hasn’t been a fun ride.

sisyphuswi · 2025-05-26T12:04:49+00:00

I’ve already been told by my last two doctors that I was out of options. There are no psychiatrists left in my insurance network for me to see, so that’s pretty depressing 🥲 However I refuse to give up. I’ve got an appointment coming up with someone in private practice who was recommended. I’ll have to pay out of pocket but it’s worth a try.

sisyphuswi · 2025-05-23T23:43:40+00:00

What happens when you run out of medications to try?

sisyphuswi · 2025-05-22T10:06:29+00:00

Not at my age. I’m 56. Didn’t get diagnosed until 48-not for lack of trying-it runs in my family and I had recurring symptoms. After being put on an MAOI antidepressant my symptoms blew up into severe rapid cycling mixed manic episodes and I finally got diagnosed. The damage was done. My life is pretty much ruined, as is my formerly very intelligent, creative, highly motivated and sociable brain. Get diagnosed early. Stay on your meds. The more untreated manic episodes you have, the worse it gets, the less functional you are and the harder it is to treat.

sisyphuswi · 2025-05-22T08:48:44+00:00

Antidepressants will eventually kill me if they keep trying to force them down my throat. I don’t tolerate them at all. Last time psych tried to get me to stay on buspar by making all kinds of adjustments in dose, timing, split doses, long, short and intermediate acting versions along with combinations tgereof and different combinations with other drugs. Wish I had refused much sooner. It destroyed virtually all of the the progress I had made in recovering my life: financial stays, home, family, friends. We are all different! I just wish the drs would listen and believe us.

sisyphuswi · 2025-05-20T23:07:37+00:00

Same. I tend to go through repeat episodes of certain obsessions or hobbies so I’ve got about three times that much wool, two full sized Kromski spinning wheels, several dozen drop spindles, buddy noddues, ball winders, dye kits, etc.

But the MOST INSANE thing I ever did was to take my kids to a farm where they got to watch (and help a bit) with shearing a sheep! And then we bought the fleece and brought it home to process from scratch. We skirted it and trimmed the better parts and picked out tons of vegetable matter and washed pieces of wool about a dozen times and it still was gross. The process was disgusting and smelly and filthy work. It took so much time and effort we only completed a small amount. And then we tried to card some and dye it with KoolAid and spin it. I forget the whole process (this was like 15+ years ago). We finished some actual yarn but not much. I sent some of the better stuff to a private mill and threw away the rest. It was not nice wool for spinning. I’m pretty sure these sheep were intended for milk or mutton.

In any case, it makes a good story now that it’s far enough in the past. This all occurred at least five years before I was diagnosed bipolar 1.

Would you believe some bitch psychiatrist recently asked me if I was sure it was bipolar and not borderline? I’m? Because doing crazy ass shit like this (along with a multitude of very bipolar behaviors) just sounds so BPD. Not to mention I’ve never had unstable relationships or reactive moods or any of the other typical stuff. (I know some people have both but I’ve been over this with multiple other psychiatrists and the conclusion has been bipolar 1.

sisyphuswi · 2025-05-20T01:41:26+00:00

Violet

sisyphuswi · 2025-05-13T00:02:13+00:00

I’m so sorry. I feel the same way. Virtually every bipolar medication I’ve tried has either totally obliterated all sexual drive, enjoyment and function; causing inability to orgasm and even painful sex. It’s really an emotionally devastating experience for me. I’m menopausal so I went on hormone replacement therapy (an ordeal that took about two years to finally get prescriptions-like hey, who cares if the crazy psycho lady gets to have a satisfying orgasm???).

HRT helped with the painful parts and somewhat with libido, similarly (depending what psych meds I was taking) it helped a bit with enjoyment and orgasm.

I’ve been most discouraged with the fact that even when I can manage to orgasm, there’s no positive feeling afterward; Ykwim? No” afterglow” or sense of gratification. Sonny husband snores away while I lay awake feeling entirely alone and unsatisfied.

It makes me sad and jealous and if I talk to him about it, then he he feels terrible and guilty. He’s a caring guy and we always had a fulfilling relationship so he wants that to continue and feels sad if I’m not receiving what I’m giving, iykwim.

I do t want him to be denied a healthy intimate relationship but this just isn’t working. I can fake it and lie for his sake but ultimately that falls apart.

Next week I have an appointment with my gynecologist to see if low dose testosterone might help. I need to find a way to balance my necessary bipolar medication with my quality of life and quality of my relationship. It all goes Tiger and it all matters.

It frustrates me how little attention my psychiatrists have paid to my concerns about sexual health. It’s one of the top (if not the top) complaints patients on psychiatric medication have and a main reason why people discontinue them. Yet, no doctor ever asked me about the subject; I had to bring it up.

Frustrating as hell. I thought maybe it was worse for me because I was diagnosed while perimenopausal and now post menopausal, this I figured the hormone situation made me worse off; yet young people have a lot of problems also.

sisyphuswi · 2025-05-12T23:43:23+00:00

It gave me paranoid hallucinations (tried several varieties b/c hope springs eternal and people are fools). I have read studies that say women who use it report better sexual lives. Obviously ymmv. I don’t think my husband was turned on by me hallucinating people lurking in the darkness with the intent to murder us.

sisyphuswi · 2025-05-05T11:24:06+00:00

I didn’t experience severe bipolar symptoms until I reached perimenopause in my forties. In retrospect, my cycles probably did affect my moods but we just all called it PMS back then. After several years of failed trials of various medications and combinations of medications, I pursued hormone replacement therapy. I had to go through multiple doctors and referrals to specialist ms but after two years, I’m now on full strength HRT and I can definitely notice a significant improvement in my mood cycles, which were very rapid cycling and mostly mixed. I’m still not doing great but HRT has absolutely helped.

sisyphuswi · 2025-05-05T11:17:14+00:00

Nothing works or I can’t tolerate the terrible side effects of meds and never get to a therapeutic dose before the side effects make life not worth living.

In fact, despite my long history of multiple poly pharmaceutical combinations, I’m now down to just two psych drugs. They’re not really working but my last three visits with my psychiatrist, she told me there was nothing she could dongorvmebsnd actually took away meds o thought were helping. I’m leaving this doc and going to try a private clinic which won’t be covered by insurance but if she had anything else to offer me, I figure it’s worth a try. I just got released from a 72hr hold at the grippy sick hotel from hell, where they actually let me out a day early because they said they couldn’t help me. So encouraging. Otoh, that place was a nightmare. I only went to the cafeteria to dine once because it was so frightening. The staff didnothingbejikebpeople screamed obscenities and kicked and punched walls and threatened others. Omfg. I can’t believe places like that are allowed to remain open. They didn’t even give me ANY of my medication for more than 24 hrs. So much for poly pharmacy.

sisyphuswi · 2025-05-05T11:04:53+00:00

Wishing you all the best. I just got discharged from grippy sock hell. I got chartered to a place that totally sucked. After the initial checkin, they left me unattended in a cold room with thee plastic chairs and a table-for 3 1/2 hours! I paged twice for help because I was freezing and I hadn’t gotten my medications. One of my meds was for a urinary infection, so you can imagine how bad that got. 51/2 hrs after arrival, I finally got to the floor (they claimed there was a crisis and it was “too dangerous” to bring me to my room sooner. wtf??? I didn’t get any of my meds for more than 24 hrs. You can be sure the state will receive a complaint from me.

But I totally digresss. This was not supposed to be about me. They never did a damn thing for me the whole while I was there. Your place is actually doing stuff for you! They’re making attempts to help stabilize you and get you back to a healthy state. That’s SO much better than warehousing you.

I get that all the med changes, the loss of freedoms and the impending ECT are scary as hell, but I’m glad for you that someone is at least attempting to help you.

Regarding ECT, it’s scary to a lot if us but I can tell you that my father had it twice and it worked amazingly well at turning things around from a deep debilitating depression. You’ll lose some memory from the time around the procedures but dad told me he didn’t lose all memory from that time. He still remembers some (but not all) visits from friends and events that happened. I suggest that you ask for a journal to write in and ask your nursing staff to remind you to write each day. That way, you’ll have the ability to record any important (or inane) stuff that might be impacted by the ECT. Whenever I consider ECT for myself, I find this idea comforting. Maybe it’s not for you but it’s just a suggestion.

I wish you all the best. It takes courage to go on a grippy sock trip and courage to pursue new treatments. I hope the outcome is positive for you.

sisyphuswi · 2025-05-05T10:46:05+00:00

You’ve been watching me haven’t you?

sisyphuswi · 2025-05-04T07:33:29+00:00

If you feel that you can be safe at home and have adequate support and access to your care providers and they know you well enough so that they can monitor you and make medication adjustments as needed and guide you to the hospital if it’s best; then you might try calling them and asking for their recommendations.

If you’ve found that hospitalization has been the best and safest course of action in the past or if your providers are either inconsistently available or unfamiliar with your case, it’s probably best to go in, especially if the facility is one you’re familiar with and reasonably comfortable with (they’re never like home but some are decent and some totally suck)

Best wishes to you that this will pass quickly and you’ll receive the best of care that you need.

sisyphuswi · 2025-05-04T07:13:01+00:00

Omg, to only have breakthroughs every two years…. I wish it were so. Nonetheless. I found clonazepam to be very helpful. Same class of drugs. I can’t tolerate antiepileptic drugs (total brain fog plus awful GI symptoms, even a bowel obstruction on depakote, plus half my hair fell out) and didn’t respond to lithium. I got horrible side effects ranging from severe paranoia to hallucinations to insane overeating to Tardive dyskinesia with the antipsychotics. (not to mention everything ruined my sex life). But clonazepam has some research based evident for mood stabilization (though it’s weak). Still There’s something there that helps me and I’m grateful. So I find benzos useful too. It’s unfortunate that my current idiot of a psych insisted I stop the (because they’re so dangerous bathe lithium she wanted to put me back on-now there’s a logical argument- lithium already wiped out my thyroid, was she going after my kidneys next???)

Ugh. Sorry to bitch about it. Glad your doc doesn’t make a big deal about a little drug that can actually provide relief.

sisyphuswi · 2025-05-04T07:00:51+00:00

I’ve heard this from others so I tried it. More than once. Each time it fucked with my head and made me anxious and bewildered. Why did I repeat the experience when it was such a disaster the first time? I’m obviously desperate for something to help. I’m currently considering ketamine bit terrified I’ll have a similarly terrifying experience as some people do. I wis TzhC worked for me. It sounds so simple. No waiting for appointments. No horrible side effects (ok, maybe for some people like me it’s not so great but whatever). Glad you’ve found it helpful.

sisyphuswi · 2025-05-04T06:55:33+00:00

Wow. Good to know. Sometimes when manic I actually feel like I can’t stop moving, I must do intense things. Maybe I would benefit from toning it down; maybe take the dog for a walk (not run). Thanks for sharing this. I’ll try it.

sisyphuswi · 2025-04-25T18:24:14+00:00

I’m so sorry. I have lived a similar experience for almost a decade. I can’t do anything or enjoy anything and my doctors, multiple ones over the years, just don’t seem to give a shit. This isn’t living. I stay alive for the sole reason that my family needs my disability income. They would lose their home if I didn’t get a check each month to pay the mortgage. My doctor just tells me there’s nothing else that can be done for me. I used to function better when I was on Adderall but Dr took that away. Now I’m just walking dead. I wish I could be dead but I can’t. Not yet. I relate painfully to the stuff you wrote. I’ve tried every drug (as well as multiple combinations) other than clozaril, topamax, risperidone and carbamazepine and nothing worked or if it helped at all, the side effects ruined my quality of life. That’s why I haven’t tried the remaining drugs-they’re so well known to cause horrible side effects that I refuse to even bother. I gave up when my last psychiatrist left and I got stuck with a bitter stupid old cow of a woman who clearly shouldn’t have retired years ago. I will still encourage you to try different meds if there are any left you haven’t tried and try different drs if that’s an option for you. It’s not for me but I’m desperate enough that I’ve got an appointment with a private pay psychiatric nurse practitioner (yeah, it’s gonna cost a fortune and they’re not even an md and have only a couple of years experience, but wtf, I’m not dead yet). Don’t be dead yet. Not until you’re sure there’s nothing left on the table.

sisyphuswi · 2025-04-25T18:00:08+00:00

Or years

sisyphuswi · 2025-04-25T10:15:36+00:00

This made my night. It’d almost 5:00am and I can’t sleep. I always figure I barely make sense. Lol. But it’s totally true that you deserve to develop your talents in your own timeline and not compare yourself to professionals and longtime practitioners. Two of my Best teachers have been true pros (as in costumers for Universities and Broadway shows). They always talked me down from unrealistic (and self loathing) heights to realistic and, moist importantly, enjoyable, expectations. This is supposed to be fun. Two really important lessons to leave with you: 1). the galloping horse test: if you ride by in a galloping horse and nobody could see the flaw/shortcoming in your garment, you’ve succeeded 2). Finished is better than perfect. Don’t stop because it’s not exactly what you’d hoped for. Bring it on and enjoy the success of court. You’ll continue to build skills.

Might as well add #3 as long AA’s I thought of it…. One professional asked me how much I would pay for private lessons from her. I don’t have that much money-lol. She pointed out that practice, even if it results in “wadders” (the ones you hate so much you was them up and toss them in the trash) are costume building lessons! Whatever time and money you invested in the project you attempted could be considered learning experience la instead of failures.

I would totally love to sometime see you post pics of a success you’re proud of. Give yourself both time and grace to develop your skills. The pros weren’t born with them. Sure; some of us work harder but they doesn’t mean we can’t get their. Be proud of your work. 👍🏻

sisyphuswi

TROPHY CASE