Yes, recovery can be lasting and real

Part of the reason some people are so skeptical about real and complete recoveries is because a lot of people who achieve it move on. The don’t hang around the mental health blogosphere and most of them don’t go into working in mental health like I probably will. Most of them go off and live their ordinary lives—as it should be—I wish I could move on but I seem to be a survivor with a mission!! But they are out there and they are thriving. My career has always been in mental health and so it will continue to be when I’ve recovered, but for most people life simply continues in whatever realms of interest they have.

Soon I should have another story I’ve “commissioned” from another one of these people who have gone off and lived their lives. Unfortunately many people have written me to tell me they have recovered when they happen upon my blog but they choose not to tell their stories. We are not all writers and some people don’t like the idea of their story being published even anonymously.

For now I’m re-posting a withdrawal and recovery story with an update now that she has been med free and healthy and happy for 2 years. Finding people who write well enough to share their stories and care to do so on top of it is the hard part. There is no shortage of people living their lives off drugs though.

I “met” Cindy through this blog a year ago and she generously shared her withdrawal and recovery story with me and then allowed me to share it with you all. I’ve not heard from her since she shared her story, so I sent her an email today. Her response is very validating. Her recovery sound and solid. Take note in the story below she did not get terribly ill for the length of time I have but certainly it was no picnic either. I point this out only to show, once again, we are all very different. Today she says:

Gianna, I’m so glad to hear from you!  I’m doing great — it’ll be two years since getting off and staying off all meds on the 5th of December!  I have two part time jobs that I love and I’m feeling wonderful — other than menopause and aging!  My mind is clear and alert and I’m truly at peace.

She is so happy and healthy it seems that thinking in terms of mental health is a thing of the past. What a joyful thing to hear. My post from last September is below:

I have (somewhat edited) emails between me and a wonderful woman I’ve met through this blog. She has an amazing story of recovery, which she was happy to share with all of you but hesitated as she says she is still in process. I asked her, “who is not in process?” and suggested she start her own blog. In any case it is an amazing story and it is an example of someone coming off a whole hell of a lot of drugs in a relatively quick withdrawal. There was a comment thread recently and I’ve been having conversations with friends and my husband about whether there is a risk in coming off of drugs more quickly. All my withdrawal groups are indeed very cautious. Well Cindy basically did this on her own and trusted her gut and got off more drugs than me in about a year. (yes I said more drugs than me!! I had not ever met, even in all the years working with the “severe and persistently mentally ill” someone on more drugs than me.) So hers is a story to think about as I am beginning to despair never getting off of the drugs at the rate I am going. She is fresh. She got off her drugs close to a year ago. That means she is still healing. It takes time. The edited emails: From Cindy:

My name is Cindy. I just turned 46 years old and I think I’ve just begun perimenopause on top of the bipolar, anxiety, post traumatic stress and borderline personality disorder diagnosis. Geez. I’m divorced, no kids (thank goodness) and I haven’t worked in 20 years. I live in Florida with my dog. More later.

From me:

hey there Cindy, You know that PTSD gets diagnosed as bipolar and bpd all the time. The trauma is potentially your only real problem. (I know I don’t know you well enough to know that so if it doesn’t fit dismiss it!!) But if it does fit a good therapist who is trained in PTSD is what is called for–not meds and more meds. let me know what you’d like to know—oh and can you share with me your withdrawal story? What drugs you were on at the end, what doses and how long it took to get off of them.

From Cindy:

Morning Gianna. Well, where should I begin? First of all, thanks for mentioning that PTSD can be misdiagnosed as bipolar and bpd, it’s something that I’ve believed for some time now. Some days I think that’s what has happened in my case and then other days I’m just not sure. Maybe I’ll never know and maybe it doesn’t really matter. I don’t know. But thanks, it was nice to hear it from someone else. That’s why I love hearing about other people’s experiences…it makes me feel less alone and less ‘crazy.’ Okay, now about my meds. A couple of friends of mine who didn’t know me ‘before’ when I was on the meds (recent friends–8 months or so–because I shut out anyone and everyone in my life a long time ago and am only now starting to build new friendships again) have been telling me that I should think about getting back on meds. They think I’m not doing well. They think I don’t want to be on meds because they’ve heard that bipolar people don’t like to take meds. Blah, blah, blah. They won’t even consider the idea that if the meds had worked, I would have no problem going back on them. Shoot, I wouldn’t have gotten off them in the first place! IF they had worked. And IF they weren’t so poisonous. I only wish there was some magic pill, but there isn’t, and my physical health is just as important as my mental health. Why can’t they see that? It’s very frustrating.

I have been on nearly every antidepressant, antipsychotic, mood stabilizer, tranquilizer imaginable. Because these friends don’t have any idea what I’ve been through, I got out my copy of The Pill Book and went through the list of drugs and highlighted everyone I could think of that I’ve been on in the past twenty years. I perused the list fairly quickly and might have missed some and even at that the list included 39 meds! Astonishing, isn’t it? And they think I don’t know what I’m talking about. I know my body and I know what I’ve put it through with all those years of poisons. I won’t do it again. Not ever. And getting off those meds was NOT EASY. No one could understand unless they’ve gone through it or are going through it themselves. A partial list is as follows: depakote, effexor, elavil, gabitril, klonopin, lamictal, lexapro, lithium (all types), neurontin, pamelor, paxil, prozac, restoril, risperdal, seroquel, stelazine, tegretol, tofranil, topamax, wellbutrin, zoloft. Due to horrendous side effects caused by these medications it was necessary to take many other ancillary medications. Meds for constipation, irritable bowel syndrome, GERDS, acid reflux and skin conditions, just to name a few. Immediately after I got off my meds (within a 5 month time period) I had gallstones and had to have my gallbladder removed, I had kidney stones, I had pancreatitis (I did some research on this just this week and discovered that seroquel can cause pancreatitis), I had a colonoscopy and they found 5 polyps, they found a nodule on my right ovary, I had to have emergency surgery to remove a benign tumor in my stomach and I was hospitalized three times for heart problems to which they couldn’t find a cause. A heart specialist finally declared that I suffer from ‘heart spasms.’ So, all of that in a five month period, right when I had begun coming off my meds. And people have the nerve to say to me that they don’t think my meds were the cause. Maybe not, but maybe they were the cause. I believe they were. I have always taken care of myself and never had any health problems before. I’ve always eaten well, exercised, never smoked or took drugs and not too much alcohol. Getting off my meds began in September 2005. I was so incredibly sick on all my meds and with all the side effects that I just couldn’t take it anymore. I was at the end of my rope. I had no quality of life. By this time I was so bloated (I had gained almost 100 lbs and weighed 250 lbs), my skin was horrible (I had hundreds of zits all over my neck, scalp, chest, shoulders and back), I was so constipated that I was only having bowel movements every three to four weeks, my balance was so off that I had to walk with a cane, my speech was impaired and I had trouble getting a full sentence out, my mind was fuzzy and dull, my eyesight became bad, my teeth began crumbling, and that’s just off the top of my head. I couldn’t take it any more. And beside all that, I was still experiencing depression and mania and psychotic thinking. I was a mess. Not knowing what else to do, I looked in the phone book to find a nutritionist. I believed that if I could find the right ‘diet’ it might help alleviate some of the side effects. I didn’t really know what I was looking for and the woman I ended up going to specialized in Chinese herbs. I was so foggy and confused most of the time that I didn’t know then and I still don’t know how I really ended up in her office, but there I found myself. She was a little old Irish woman with red hair and outrageous clothes and she did a bunch of things that seemed like ‘mumbo jumbo’ to me at the time, but now, two years later, I don’t think it was. I thought she was a bit of a quack but I was sooo desperate. First she tested my Ph, then she looked into my eyes and finally she did some ‘magnetic’ kind of thing wherein she touched her knee to my knee and put some herbs into the palm of my hand and she could ‘feel’ what herbs my body needed and didn’t need. Again, I wouldn’t have cared if she did a rain dance or smoked a peace pipe, I just needed someone to help me. Well, she told me at the time that she had been diagnosed with schizophrenia when she was in her twenties and had been on meds and in/out of psychiatric hospitals for most of her life but once she found out about herbs and other healing modalities she was able to get off her meds and she had been off of them for sixteen years! She told me that she wasn’t advocating me going off my meds and I had no plan of going off my meds since I had been told for twenty years that I was going to have to be on these meds for the rest of my life. I had also been told that I would never be able to work and my ex was told that if he didn’t continue to support me and take care of me I would end up living out the rest of my life in a state hospital! I just wanted help with the side effects. At that time I was on the following: Seroquel 1200mg/day, topamax 800mg/day, lamictal 500mg/day, wellbutrin 450mg/day and klonopin 6mg/day (prn up to 10mg/day). Whew. I had been on that combo for about a year. Klonopin is the only med that I was on the entire 20 years. So, Ruth started me off with a huge complement of Chinese herbs. About 20 different herbs per day, anywhere up to 50-60 capsules per day and that was on top of my 18 psych pills per day. Along with the herbs she put me on a very restrictive list of foods to eat. I can’t remember it all now, it was based on my blood type, and there was no dairy, no meat, no fish, almost no fruits, very few vegetables and a couple types of nuts and grains. Almost immediately I began to feel better. I began having bowel movements every day, my mood lifted, I started losing weight, my skin improved and so on. Within a month I thought I might be able to lower some of the doses of my meds. I spoke to my psychiatrist and Ruth about it and they both agreed that would be okay. I began with one med (I don’t remember which one, how much or in what order) and then the next and before you know it, I was completely off of one and then the next and then the next. I was only able to stay on that strict diet regime for about 4 months and I took the herbs for about 8 months (I think). The herbs were costing about $400/month and then Ruth’s fee was about $100/month and my ex started to get pissy about it. I told him that my psych meds had cost about $2500/month and psychiatrists/therapists had cost about $1200-1500/month, wasn’t he pleased that I had lowered it to only $500/month? but of course, he wasn’t happy. Why? I think he wasn’t happy because he didn’t want me to get well. Who could he blame his miserable life on if not me? So, by the summer of 2006 I was on my own. I did fairly well and by December of 2006 I was finally off all my meds! (and the herbs, too). In January I read my first book about living organically. I started delving into that area. Now I’m eating organically and I’ve changed everything (from what I put in my body, on my body and use in the house). No chemicals, no pesticides, no artificial coloring/fragrances, no parabens, no SLS’, and on and on. No bad fats and no bad sugars, however, I still eat some fats and some sugars. I’m not that good, yet. I’m only taking a few supplements; multi-vitamin, magneseum, B vitamin, eye health vitamins, perimenopause herbs and digestive enzymes. I was taking fish oil supplements but didn’t know if they were necessary or not. For the past 7-8 months I’ve just been experimenting. It’s expensive to eat this way and take all these supplements, so I’m trying to streamline and take just what is necessary. My ex has put my house up for sale and although he is still supporting me, he keeps saying that’s about to end. I know I need to get a job but I’m scared to. I haven’t worked at all in 20 years and I only had a couple of inconsequential jobs before that. I was never able to hold a job and the stress can put me into a tailspin so quickly. Maybe now I’ll be able to hold a job (if I can even get one) but I’m so afraid of it making me sick again. Once I get on the ‘crazy train’ it doesn’t take me long to get to the end of the line….he, he, he. Hope that wasn’t too long and boring. I just wanted to share, don’t know if it gives you any hope or not. Anything you could share with me would be gratefully appreciated. I’m hosting Bunko tonight. Have you ever heard of Bunko? That’s one of the benefits of being off my meds. I’m beginning to have a bit of a normal life. I had lost the ability to socialize and hated to be around others because I felt ‘judged’ or felt like it was too much of a struggle to try and fit in. My mind was often so fuzzy and slow and my mood so unpredictable. But now I can have 12 women over to the house, prepare hor d’oerves, etc. and actually look forward to it. I hosted it last month and it was so much fun and the women had such a good time that they’re having it my house again this month. That, in and of it itself, is remarkable for me. For the first time in my life I have hope for the future. Thanks again for sharing, Gianna, and I hope you have a good day. Cindy

From me: (largely edited as you know my story)

Oh…one question–how fast did you taper off the drugs? How long did it take? You are the only person I’ve ever met who was on more drugs than me. I’ve always been on more than anyone I had met. I think we should both win prizes

From Cindy:

Dear Gianna, I agree….I say we both win prizes. What should we win? I would be satisfied with being able to stick my tongue out and say “I told you so” to those people who have doubted me when I’ve told them how many different meds I’ve been prescribed and at what doses. They’ve always looked at me and said, no doctor would prescribe that many meds and at those levels. Insinuating that I must be exaggerating or not remembering correctly or that my doctors must have all been quacks. On the contrary, I don’t believe I’ve had bad doctors, I think they just didn’t know what else to do. Hmmm, this isn’t working so let’s up the dosage or let’s add this med or that med. Maybe that’ll work. My ex used to complain that he thought I was a guinea pig to these doctors and I used to defend them and say, what else are they supposed to do? Anyway, as I said, I don’t really remember how long it took me to taper off the meds but I think it was about a year. September 2005 to September 2006 and then three additional months for klonopin. I didn’t really know what I was doing and I didn’t have a plan — I just did what felt right. I didn’t keep track of what I was doing either, I wish now that I had. If I remember correctly, though, I think I lowered the dose a little on one med and waited to stabilize, then lowered it a little on another med and waited to stabilize, etc. Again, I never had the intention of going completely off of them, I just wanted to be on less of them. After I lowered the dosages significantly I was able to one by one stop each med altogether. Don’t get me wrong, it wasn’t easy. In fact, it was quite difficult and I believed at the time that I would have to start taking them again. I suppose by that time it was more of an experiment than anything else, but low and behold, it’s been a year now and every day I feel stronger and stronger. I now believe that I won’t ever have to go back on them. I believe that you can handle whatever moods or anxiety you might experience through diet and exercise. I think I forgot to tell you this too. In February of this year I started exercising again. I hadn’t exercised for the past few years because I had gotten so heavy, my balance was so off and most of the time I just didn’t feel well enough to exercise. In February I decided to go for a walk. At that time I could only walk as far as my mailbox. It took two weeks before I could walk around the block. Now I walk almost 4 miles a day and I’m training for a half-marathon in January!! It truly feels like a miracle. While I was on the herbs that Ruth gave me, my body began detoxing. She told me it was going to detox and I didn’t even know what that meant or why my body was going to detox. I thought ‘detox’ was just for street drugs or alcohol withdrawal. I didn’t really realize how sick my body was. And I’ll tell you, ‘detox’ my body did. It wasn’t any fun at all. Geez, I haven’t thought of that time much since then and I had forgotten how bad it was. I suppose you have to be as desperate as I was to be able to get through it. I’m glad I didn’t realize what I was in for or even what I was going through while I was going through it. I remember calling her all the time and telling her how bad I felt. Many times it felt like a bad case of the flu. I had chills and fever and bad mood swings. Those periods would last for a few days and then I’d feel better for a couple of weeks. She used to say that my body was going through a ‘health crisis.’ She said it was normal and I believed her. It was a good thing she was a nice old grandmotherly type or I might have doubted her. After four months I remember asking her how long my body would go through this and she said at least a year maybe two. I wanted to die. She was right, however. It takes your body a long time to heal itself after so much poison and toxins and stress and all. It’s better now and it was definitely worth it. Best to you, Cindy

From Cindy again:

Dear G — I know my last e-mail was soooo long, but I forgot to tell you about my fears of going off klonopin. Over the years klonopin became my friend. I loved my klonopin and I never went anywhere without it. I didn’t go a day without taking it and I knew I could count on it to help me get through anything. While most of the other meds were only somewhat effective, klonopin always did the trick. If I experienced a little bit of anxiety, klonopin would calm me down. If I had a major panic attack, klonopin would calm me down. Whenever a med would stop working, klonopin always continued to work. While I was tapering off the meds I decided that I was not going to stop taking klonopin. It had always worked, was still working and I didn’t feel like it was contributing to any of the awful side effects. Was that just because I liked how it made me feel? My guess is yes. The only reason I stopped taking klonopin last December was because my ex wasn’t paying for my psychiatrist anymore, my refills had run out and even if the doctor would have written me another prescription without seeing me again, I couldn’t afford to have it filled (my prescriptions had always been charged automatically to his account and he closed the account). So I was forced to stop it. I was not happy about that, but I managed. I was scared to death of having a panic attack and no klonopin. I was scared to death of having anxiety and no klonopin. What was I going to do? Well, guess what? It’s been over a year since I’ve had a panic attack. Not one in all that time. And as far as the anxiety goes….I know this sounds hokey-dokey but I’m learning how to meditate, I practice deep breathing, I listen to classical music and I massage pressure points in my body to release the toxic energy. It works, it really does. I didn’t think it was possible to live without all my meds and especially my faithful klonopin, but it is possible and it’s so much better. Does that mean I will never have another panic attack or anxiety…I doubt it, but I know now that if I do I will be able to get through it without klonopin. It’s gonna be okay. That’s all for now.

At this point I was shocked. Cindy had been on 6 mg of Klonopin and up to 10 mg prn. That is the largest dose I’ve ever heard someone being on. I’m on 3 mg and got up to 6 mg prn a day and that tends to be a very high dose in the withdrawal groups I’m part of. Also she went off quickly–this also appeared amazing to me. I’ve talked to people who went off of 1 mg of Klonopin and it took a year. I asked Cindy about this:

are you telling me you cold turkeyed off of 6 mg of Klonopin??? that is incredibly amazing and I wouldn’t believe it at all if it wasn’t coming straight from your mouth. It takes years usually and people have really nasty withdrawal syndromes–you give me hope girl….I have 3 mg to get off of.

Her response:

Not exactly. I knew I was running out of klonopin so for the last few months I tried to make it last as long as I could and started taking it only when I really, really needed it. So my last refill (100 2mg tabs) lasted me for the months of Sept, Oct, Nov and part of Dec. Then nothing. Yes, I’ve heard that it’s very difficult to get off of and the last time I was hospitalized there was a woman in there who had to be detoxed off of it and had hallucinations and all the other bad stuff that goes along with it. I’ve heard horror stories about it and I don’t know why it didn’t happen to me. Another weird thing is that I never built up a tolerance to it and I hear that most people do. I was on a huge dose of it, I know, but 2 mg worked as well for me after 20 years as it did in the beginning. I suppose I was very fortunate in that regard. But even so, if I can get off of it anyone can!! Thanks again, G.

There are people who would call three or four months on that amount of Klonopin cold turkey. I have corresponded with one other woman who had been on 1 mg of Klonopin for 10 years and got off in two weeks. It gives me hope. Maybe this won’t drag out forever after all. Maybe all the people in the withdrawal groups are there because they are the ones having the really hard times. Then maybe we all brainwash one another. I don’t know. Anyway, what an awesome story of courage and determination! Thank you Cindy for offering hope to everyone who might grace my blog.

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27 thoughts on “Yes, recovery can be lasting and real

  1. O I forgot to wish everyone a happy Winter Solstice Day.
    We have a place in Ireland called Newgrange. It was built 3000 BC. On 21st December, at sunrise, the light enters a passageway,, above the doorway and travels through the mound into an inner chamber. It is a very sacred place. The history of Newgrange is facinating. The work done on it in transporting hugh passage stones from areas a good distance from Newgrange and the mathematics used in getting the angle right for the rising sun to shine into the inner chamber which is a good distance inside the mound.
    From now on the days will be getting longer I think a few minutes every day which is good news for brighter days.
    When I think of winter – i say the change happens today and it is nice to look forward to it. In Ireland, the sun is rising at 8.30 am and it gets dark at about 4.30pm in the evening.


  2. Wow! It is great to be among such good company. I am coming off my Lithium. I really like where I am at the moment. It is hard coming out and telling your story. The situation has to be right. I go to a monthly psychosis discussion group whereby I have spoken on my experience. In that kind of a group it is easier to talk out. I think I have a problem accepting myself for who I am, so when I speak out I have to feel safe enough to do this. When we do this, we can help others. But also we have to forgive ourselves for what we gone through. The person I am today is made up of all my experiences. I am who I am now today with all my history. I have to learn to love myself warts and all. In letting go of the hurts, in talking through my blockages with my counsellor, light comes into my otherwise dark areas. Talking about our stuff, loosens the emotions and fears. Life without Lithium. My spirit can return to me, I will be me again, and stronger, wiser and a more loving person.


  3. What an incredible posting from all of you””

    Reading Cindy’s story sounded so much like mine-even the Seroquel and Pancreatis.
    I started a new life when I went off drugs. I separated myself from the friends on psyche drugs. They are still having crisis situations I no longer am part of. I don’t tell new friends I was on them. The whole darn thing was a nightmare and I got branded because some doctor who barely knew me decided drugs would help me.

    I feel confident in myself now to handle any problems that may come up. I can figure out what to do on my own with out depending on drugs.The drugs made me numb and fuzzy.
    I’ve been drug free for almost 6 years.


  4. Thanks for thanking me, Ruth. Sometimes I get hung up on if I’m being too egocentric and going on about me, me, me. See what stupid doctor’s labels do? I end up being too vigilant looking for ‘signs’ of my disorder. Which probably makes me more neurotic. I thought psychiatrists are supposed to help people be less that.

    You, on the other hand, are enabling my need for external approval. Stop it! ; )


  5. Thanks for sharing that story, Froscha….even more unbelievable/ironic, as you say, because of the agency that hired you and the understanding they had. Our stories are very similar, only in reverse as you say.

    Yeah, it is hard navigating the working world on psych drugs and having to be in the closet about your withdrawal process. It’s like you’re going through chemo, but can’t tell anyone.

    If you had cancer, but were still trying to work despite various treatments/medications/chemo, you would have everyone’s compassion and help, but since it’s about mental illness, what you get is everyone’s disdain and judgement and trying to make things harder for you rather than easier. People basically rolling their eyes behind your back as you struggle.

    I know it’s just ignorance (people can never understand unless they’ve had to deal with it, or someone they love has had to), but it’s still so hurtful and angering.

    My supervisor who threatened me was also someone I had come to think of as a friend. We were both visual artists and lovers of the thrift store. She would bring cute finds to me and vice versa. I did two different articles on her as an artist that were published in the local papers, which she was very proud of. So it hurt extra much because I liked and admired her.

    I have so many painful memories of that time. It was humiliating and I was treated poorly. It still effects me to this day, and I will have to do forgiveness work at some point.

    I still feel I can’t have a “real” job because of how hard it is to come off these meds. I can handle part-time easy jobs and that is about it.

    I have become very closed with employers about the issue. My current employer (who I also consider a friend) has told me about her year on prozac (she was easily able to come off), and about her partner being on Lexapro.

    Normally these disclosures would open me up about my own experiences. But she is my employer and she can take away my job. It’s not an equal relationship.

    And I suspect if she knew my occasional lapses in job performance were related to drug withdrawal, she would view me differently, and think that I was just a depressed person for life that needed to just stop being so stubborn and take my drug. I don’t want her to have that window into performance, or to look at it through that lens.


  6. Ruth, though this is kind of the reverse problem, so maybe this is inverse empathy. 🙂

    My story is, I lost a job over a year ago because I missed two days of work as a result of an increased dosage (seroquel). The first day, I arrived on time but went home (with permission) after 30 min because I felt too sick. The second day I slept straight through so never phoned in to say I’d be away. The third day I came in sheepishly and explained to my manager what had happened, but without naming the drugs or saying what they were for. She asked me to provide a list of my meds. When she saw I was uncomfortable with that suggestion, she said (paraphrasing) “Oh it’s not a big deal. I know what other people are taking. It’s just so we know in case anything happens.” I tried to skirt the issue, and hoped it wouldn’t come up again. (In retrospect, I should have spoken to HR about my concerns.) About a week later, I was fired. After the meeting with the HR person had ended, and we were alone again, she said something like “If only you had given me that list.”

    I should mention, 1) she was a nurse before she moved to Canada, so I think she felt entitled to that level of trust with medical information; 2) she had stated during an informal kitchen conversation that she strongly disapproved of so many people taking antidepressants in Canada, so she had already declared a bias; 3) it is illegal for employers to ask for this information, and I had already disclosed a medical disability in my HR papers when I first signed on… which is probably why they ended up giving me a very generous severance package “if you sign this waiver” despite that I had been there only 10 weeks.

    The worst part? My friend who worked in the same space, who got me the referral that got me the interview, and who knew my situation, blamed me for not confiding completely in our manager. She sent me an email at the end of the day I had been fired to tell me this. She had been on a garden variety antidepressant for a few months the year before and had no trouble getting off it, and really I think she thought I should have been off mine as easily and that my situation was comparable, because she didn’t ‘get’ the magnitude of the side-effects I was dealing with on antipsychotic/ anticonvulsant drugs.

    My next f/t job I lost also because of the side-effects (seroquel + lamotrigine = hangover), which surprised me because: I had partial disclosure during the interview, even got the job through an agency that had “mental health” in the name; the employer was an agency that hires people with disabilities; and it was an agency that puts people with disabilities in touch with other more specialized agencies that will help them find a job. I was hired from one of those places. Kind of ironic.

    Navigating the working world on psych drugs is tough.


  7. Oh God, Ruth that’s a horribly revolting story…sometimes I just wish I wasn’t living this life…why this life??


    I want a more pleasant battle to fight…one in which our very souls and beings are not being questioned—why can’t the most important issue to me just be environmentalism or one of the other dozens of very important issues facing our planet and society today??


  8. I am reluctant to out myself to employers because of past experiences that were very hurtful and frightening.

    I worked at Duke for 10 years or so. I was trying to come off multiple medications for misdiagnosed bipolar. I was really having a hard time. This was around 2001 thru 2003 (the time period of this particular job and the beginning of withdrawing from medication).

    I was, admittedly, a mess. I didn’t know anything about proper drug withdrawal. I was having a hard time staying glued together emotionally at work, and getting my work done. In addition to the med withdrawal, I had broken off an engagement and long-term relationship.

    I confided to my supervisor (interestingly, a former psychiatric nurse) that I was withdrawing from psych meds and that was what was causing most of my difficulties.

    As I continued to have problems getting my work done, she told me she had talked about it with her supervisor (a psychiatrist), and that I would need to go back on my medication.

    I said “Joan, you can’t force me to take my medication. That’s not your choice to make. I don’t even think that’s legal”.

    She said (this is like some sort of evil movie line): “Oh, but I think we can, Ruth (my real name), and I think it is legal”.

    I basically told her I would quit the job before being forced to go back on medication, but this really scared me. I had never been threatened by an employer in any way before. It still makes my blood boil with anger to think of it.

    I had felt safe confiding in her because I was working for “The Center for Religion, Spirituality and Health”…I thought we were all spiritual and mushy gushy about everything. I was dead wrong about that.

    I have had lots of employers since, and have never said anything about being on psych meds, or mentioned my withdrawal process.


  9. not OT at all…not in my opinion…

    NO they do not test blood levels of lamotrigine…it’s possible to do but they don’t do it in general as it’s not believed to be toxic and people who take it for epilepsy take much higher doses then people who are prescribed it for mood stablization…

    depakote on the other hand does get tested for levels…

    tomorrow (or at midnight actually) I will be posting on the topic of how I’m judged as a “consumer” and how shitty it feels.

    Frankly I feel like going and hiding away…but I don’t think it’s possible to go back in the closet…

    I want to transcend caring about all this shit…and I believe it’s possible to rise above the fray and do even more good. but I’m not there yet.


  10. I have trouble disclosing parts of my story on my own anonymous blog, and even commenting on other people’s blogs like I do here. I expect all my opinions to be entirely discounted if I’m entirely clear about my medical history. And the stigma is terrifying, even behind a pseudonym. Although I do keep it in perspective remembering what immense stigma my brother faced as a gay man with AIDS in the late 80s/early 90s. In a way, I’m lucky to have the experience of -this- stigma to have a closer understanding of what he went through, but without the, you know, death sentence.

    I have little credibility with my own doctor. ex. I made a parting comment once that came out sounding acerbic because I was overtired and my tone came out dead flat, so now I have BPD on my records. Which means my perception has less value, and now that he knows how much I’m challenging the idea of being on meds, I’m beginning to suspect he doesn’t take my side-effect concerns as seriously, like I’m being overly vigilant and getting carried away with the post-consumer community. (I do possess critical faculties in all areas of my life and I think I’m being realistic in my concerns, having done some research.) Which is funny, because he was concerned today about the long-term effects of my using taurine to help me sleep, which is more than he’s shown for the psych meds he’s prescribed. (He even wants me to do the research on taurine for him!) Today he told me not to worry about tardive dyskinesia — essentially, because poverty is enough of a drag, and I don’t need something new to worry about — even though I pointed out that I never had head tics before these drugs. I pointed out that ‘tardive’ refers to the fact that symptoms continue and onset may even begin after no longer taking the drug, which indicates how highly damaging these drugs are. He even wondered at one point why I don’t try lithium again — I reminded him it made me feel dead inside — and thought I was overstating the problem when I said that, besides, I don’t want to be on a drug so toxic I have to get my blood tested every few weeks. He helpfully pointed out that they test blood for lamotrigine in the states — is that true? — and this supports his position that I’m overly concerned, how?

    For a while I also had less credibility with my family, post-diagnosis. I remain careful about who I talk to about my original diagnosis, and now, among those who know, about my undiagnosing/detoxifying process. It is frustrating always having to reassess my level of trust and adjust my openness accordingly. I am fortunate I have a few close friends I can be completely open with; who trust my insight and intelligence, and support my process of taking my health and identity back from psychiatry.

    Going to say it again, I am so grateful for this blog. I might be doubting my ability to recover and move on if I only listened to my psychiatrist. He’s more progressive than some, but he’s as neurotic as me (really!) including about his abilities as a doctor (!) and writer, and has been practicing his profession too long to challenge it much further than wisecracking about the power and corruption of the pharmaceutical industry. He agrees that there is an overabundance of bipolar diagnoses but doesn’t seem entirely convinced I’m one of those cases, despite that I only had one episode of mania 5 yrs ago as a result of an antidepressant (in convergence with other unique factors). He even shared that diagnosis with an agency that I had recently allowed to contact him for a referral, to start their free CBT sessions. I had been on a waiting list for 7 months… and now I’m disqualified. He blames it on their discriminatory attitude.

    (Apologies if any of this veered OT. I am freshly indignant — in a non-paranoid, non-hypervigilant, non-delusional way, I mean — over my visit with my doctor today.)


  11. NG,
    If you want to share your experience with someone you don’t want to reveal yourself to you can talk about “someone you know” who had a really hard time coming off drugs…but is now doing better…it is possible to share the message and be discreet and sometimes it simply makes the most sense…

    and thank you Aunty Christ, Martha and Carrie for your comments…

    Aunty Christ…I’m still planning on reading that whole history of yours…but I’ve been sooo tired…it’s on my agenda…


  12. Moss,
    I don’t believe in penance. Not in my religious upbringing.
    But I do feel like I need to help others.

    But …I am scared to death to be out.

    I am going through some tough things right now….when a counselor for my specific issue mentioned “biochemical imbalance” my heart skipped a beat. She then proceed to tell me how she takes anti-depressants and how she knows she needs them because when she stops she feels bad.

    I thought about telling her what I know. But I didn’t…because I would have “outed” myself.


  13. I appreciate all of the honest discussions that can be had in the blogging environment. The support, the sharing, and the understanding are fantastic.

    We each have our own experiences, our own horror stories, and our own reasons – but it is nice to be heard!


  14. What a great story. Congratulations to Cindy, and to you too, Gianna. I can’t imagine all you’re going through right now, but I wish you the best of luck and am happy to hear you’re hanging in there. As for your last two comments, I am absolutely outraged by the mindset of both people you were communicating with, who tried to dismiss your point of view. You have a wealth of knowledge and insight to share, obviously, and it’s exasperating to hear that those people were less interested in insight than in credentials or “normality,” for lack of a better word. Infuriating!


  15. Thank you for this post. I really needed something like this. It’s very encouraging to say the least. I also understand why many people don’t feel comfortable sharing their experience. I’ve run into professionals who openly share their mental illness diagnosis, and initially this seems like remarkable acceptance and de-stigmatization, but it seems as if this acceptance is highly conditional upon one’s personal choice to tow the “party line” that is so very often not in our best interests. Anyway, just knowing that there are many people safe in their arcane status who are safely doing this gives me needed encouragement.


  16. Marian I had a sobering experience the other day which makes me wonder about how I will proceed when I move on with my career. I was not “out” when I practiced social work and I was highly regarded and respected in general. The one instance where I did out myself I was treated like crap…

    Anyway, the other day I made a comment on a blog of someones who is very well known in the internet world as a “bipolar expert” but this person themselves is a consumer who is also pro-pharma and in general in tight with the pharma ho’s that control this world.

    Without forethought I left a comment on a post I took umbrage with. I chose not to use my pseudonym, but used my real name instead. The first comment I did not mention my professional history nor my “consumer” status…we got into a discussion with my arguing my point.

    At one point I told this person, “in my experience as professional social worker…blah blah blah…

    do you know what this person did?? They went back and CHANGED their post based on my speaking as a professional…had I had my pseudonym and my website attached to my name not such thing would have occurred…

    it sickened me.

    and frightened me too because it dawned on me for my own sense of sanity it would be much easier to speak from the closet with my knowledge of being a consumer, but AS a the professional I am.

    Frankly I don’t know how I will reenter the professional world…I’m sick of not being taken seriously.

    I’m also part of various “professional” email groups— the holistic psychiatry group is horrifyingly silent when I share. They still suffer from much of the same crap the ordinary psychiatrists suffer from…not every one of them, but a large number and they, through their silence discredit me routinely.

    The psychologyl group is much more welcoming and in fact published me in their journal…but they have a lot of people like us in their ranks…

    Anyway…I’ve thought about reverting to my real name in some circles and starting to post as a professional, but that may also screw with my head too much…I truly am that professional but my personal experience informs my judgment in large part and damn it, I don’t want to hide, but I’m also tired of being hurt and ignored by people who think they treat us like real human beings….and are completely blind to their hypocrisy.


  17. Frustrating is exactly what it is. I know several people who’ve emancipated themselves from the system and are recovered. But either they’ve moved on to a life, where there’s no room for any activism, or they’re afraid of the consequences if someone recognizes them when they tell their story, even if they do it anonymously. Often it’s both. Unfortunately, it confirms people’s belief, that there is no such thing as full recovery from “severe mental illness”, that there only are a very few individuals – compared to the total amount of people who are recovered – who do speak out.

    Another thing is, that there is a catch 22 involved. Just yesterday evening I once again ended up getting very agitated over what someone who thinks she, as a “normal” person, has a right to judge if other people’s reality is really real, or not, and, fitting in with this, if these other people are entitled to self-determination, or not. This, of course, was all about “delusions”, “lack of insight”, and “the mentally ill”. At some point during the discussion, I “outed” myself, saying that according to my own experience, my reality was just as real as anyone else’s, and that I didn’t see, what in the whole wide world ever could give her, or anyone else, the right to judge my reality as “not real”, and thus me, or anyone else, as not entitled to self-determination. The problem is, the moment I “outed” myself as being one of “these mentally ill”, my arguments became those of someone with an “insane” mind, an “insane” way of thinking, they became “insane” themselves. So, by using my own experience of an “abnormal” reality as sort of an argument, I was also at the same time digging my own grave.

    The question turns up again and again, do I reveal myself, thus having the advantage of being able to speak from my own experience, or don’t I, so no one can invalidate my argumentation, saying that I’m just another delusional loony who lacks insight?


  18. yes David,
    whenever people write me to tell me they’ve accomplished getting off meds and living their lives I ask if they will share their story. Most are not willing to publicly but they give me a brief version…I’m privy to hundreds at this piont….

    It’s incredibly frustrating to know what I know and know that most people don’t believe it.

    Others say they will share their story but then they never write anything.

    So it’s a tough one. Most people just want to move on and are not writers at heart.

    I’m not sure I understand what you’re saying?


  19. And oh yes… early this month I passed my 5 year drug-free anniversary. I don’t have an exact date, but remember it being during the first week of the month.


  20. Wow — very inspiring. I wish there were more people willing to share their off-meds stories … I think it would make a difference as far as how people regard the phenomenon of “undiagnosing.”


  21. I saw a reasonable explanation for why some of us hang around trying to help others – on TV tonight, as part of a dramatic script. The theory stated was that we feel we have violated some trust or other at some point, and are working for penance. Made sense to me at the time… even if it isn’t true, it’s what we (some of us anyhow) believe.


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