Question of the Week - Disclosure

5/11/09 7:01am

This question poses an interesting dilemma.

I ordinarily do not disclose although co-workers are aware. When I won the NAMI-Staten Island volunteer of the year award in 2004, I submitted the newspaper article reporting that event to the employee newsletter committee. Little did I know the editor would lift the content of the article directly into the employee newsletter Good News section. So everyone who worked at the library knew I won the award because I was a contributing editor to Schizophrenia Digest, was the leader of the peer support group, and was an In Our Own Voice presenter for NAMI. The response was only positive: five co-workers congratulated me. One woman said she felt like a slacker next to me because I did volunteer work and she hung out in trendy cafes.

13 years earlier I had relapsed and was hospitalized again for two weeks, and when I returned to work everyone knew what happened and co-workers treated me differently. It was like I walked around the office with spots all over my body. I had been at that corporate job only two months when I had to be hospitalized.

I wonder if working in a library is an environment more conducive to one's quirks. I feel that since I had been in the trenches with my co-workers and they got to know me as a person, it was easier to accept me after they found out I had SZ.

On my next job, I wouldn't disclose because I expect to work in the field and it wouldn't be appropriate to share my diagnosis with anyone, especially clients.

What has been your experience with disclosure? I have more to write about this topic, yet will wait to hear from you first.

David Robbins

5/11/09 10:47am

As you all may know I was a speaker for the Mental Health Association. I had the opportunity to speak to people that have no "illness."

The first time I spoke at the place where my brother lived was the one of the hardest. I spoke in front of the employees. It was an effort to educate them. I was very nervous. When it was my turn to speak, I started out slow, but the overall experience was awesome. They staff were amazed that I was hearing voices right then and there and was still able to get up in front of them and talk.

I also talked to a psychology class, three different times. That was the best talk. They were curious to say the least.

When I left my last job, not many knew I had SZA. I've run into a few and told them I had SZA and they say "I never knew."

I told my dentist that I wasn't normal, because of my SZA. She's said "I always thought you were normal."

When I was waiting at the hospital for my ECT, a woman who was there to give a ride to someone, asked Margaret why I was there and said "he acts so normal."

And lastly, I decided about a year ago to blog on my local newspaper website. I call it The Voices Within. I started that blog to reach out to people who are clueless about the Mentally Ill. I've gotten some good comments. One time I posed the question would you knowingly date a person with a mental disgnosis. One response was " yes..if there was the right chemistry."

I ran across a woman that worked at the state hospital, at the grocery store. We stood there and talked about 20 minutes about the hospital as people walked around us.

Disclosing your illness is personal. You may get some crank people that will look down on you. Then there's others that respond in a postitive light.

I've been fortunate that my small effort to educate, and give SZ a different face has been good.

I am not scared anymore.

If you decide to disclose, be warned that some will not take the news lightly.

I was surprised at the number of people that are not judgemental. The need to educate will always be there. I will be there to offer any insight.

Dave

Donna-1

5/11/09 1:03pm

One place where I had worked for a couple of years, I had to disclose to my supervisor to get some needed accommodations. Like not having to open the business because I needed to sleep later, not making deliveries to places across town because I have trouble with directions, and not having to learn the paperwork/business end of things. I was willing to do all the grunt work. So I was accommodated. But a new supervisor took over and when she was told I had sz, she was on a mission to get me out of there. Eventually, I had to quit.

At other places of work, sometimes it has become necessary to ask for accommodation or need an excuse for something sz-related. But I have simply said, "I have a brain disorder," and leave it at that. Most people are willing to accept that and not ask any more questions. One girl said, "Well, of course, I knew that something was wrong with you." That was kind of disheartening.

I have had the experience of disclosing and the other person has someone in her family who also has sz. Then it becomes a kind of bonding experience. But I have found that more often than not, that I wished I had not disclosed no matter what the situation was. Whether it is with friends or work associates. It is just a very private matter and sometimes backfires. You want understanding and you get the opposite.

But, you know, it depends on whom you tell and why and what all the circumstances are. I don't tell now unless there is a definite need to know and some level of trust.

Carolyn

Christina Bruni

5/11/09 3:39pm

A unique dilemma is posed:

To get the effect of the Geodon you need to take it with food, preferably at least 200 to 500 calories. So if you go on a date, to a business dinner or somewhere like a wedding, you'll need to take the Geodon with the food.

The option is to not take it, go home, and take the Geodon with a power bar or bowl of cereal or salad. You could gain weight doing that. You simply can't take the Geodon without food or it won't work.

Some people would engage in partial compliance and skip doses when they're eating in public, yet that jeopardizes your mental health and ultimate recovery.

What does a girl or guy do?

Christina

David Robbins

5/11/09 4:04pm

I carry my 1pm meds in one of my used medicine bottles. I have to take mine with food too. I often find myself out somewhere close to the 1pm pill time. I've taken my meds at restaurants, movie theaters, parks.

I would say, take them wherever you are. I learned years ago that taking meds at the same time everyday is essential for the meds to work and maintain the level in your system. It helps me keep stable.

I have to have my meds and if people don't like it, they don't have to. My meds keep me away from the psychosis that lurks in me.

It also helps to develop a routine.

On ECT days like today, I have to take my meds after ECT. Again I carry my meds with me. I am very intent on taking my meds the same time.

Dave

Christina Bruni

5/11/09 9:03pm

Well, I have a lot of "billiards," if you know what I mean. In terms of guts. You are going to ask what possessed me to do what I did, and I really have no answer. The astounding thing is what happened when I took the risk.

I am a member of the Italian American Writers Association. In August, 2004 they chose me as a featured reader at their poetry event at Cornelia Street Cafe, so I had my fifteen minutes of fame. I had just begun writing my memoir, Left of the Dial. When I took a seat up front in the cabaret room so I could be close to the stage when my bio was read announcing me, the woman I know who is the host of the event was at the table across from me, flashing a copy of New York City Voices, the mental health advocacy journal. At the time, I was a writer for that newspaper. I had no idea it was not a coincidence that she was flashing the paper at me.

She asked if she could mention in my introductory bio that I wrote for that paper, not knowing I would be reading the breakdown scene from my memoir. It turns out she knew someone with SZ and so was a long time reader of the advocacy journal. I had known her for five years, had been writing for New York City Voices close to two years, and I had no idea she knew my personal history.

She knew and she didn't care. What a small woirld, that we are all connected to mental health issues by six degrees of separation. I had no idea she knew until she began flashing the paper in front of my face.

That night, I read the breakdown scene, and ended with a positive ending that was a day in my life in 2000 when I worked as a public service librarian and had recovered.

So you see I had "billiards" because who else would dare risk global disclosure in front of an audience of mostly strangers? To this day I have no idea what compelled me to choose that scene to read.

I have another disclosure vignette to write, however, I'll sign off for now and await your own comments.

No, I will end here with something which drives me to this day: I'm a reverse snob. I don't expect the chronically normal to understand or to "get it" about living with SZ, and that is why I prefer the company of my friends who have MIs. We can be in a pizza joint sharing a pepperoni pie and will feel comfortable about talking about some aspect of our recovery lives, like the medication, or what happened to us or our experiences.

I do have one other story about accidental disclosure that I will reveal after I hear from more of you in this lively debate.

Christina

OceanBlue

5/12/09 10:47am

My life has mostly been lived in the shadows as far as disclosure is concerned. My family doesn't even talk about my illness. Certainly never to give it a name.

Last winter I was going through a difficult time and thought I should try reaching out. I wrote a few emails to good friends telling them what I was dealing with at the time. Days and days went by with no responses. One finally called and we had a short chat about the normal things. No mention of my mails was made. A bit later the other contacted me with a supportive letter and a bit of psychology advice. I realized that if I wanted to keep these very old friends in my life to any extent I needed to play normal with them as with the rest of the world.

I have since mailed them both a couple of times with no mention of illness or anything involved with it.

Really, what is there to say, and when is there a good reason. For me Geodon makes me pass out for 1/2 - 2 hours. At my last job something had to be said because I was sleeping on the job. The owner was understanding if not happy about it. I would slip away during a slow period in the morning and take my nap.

I met another old friend recently after almost 20 uears. I had prepped myself for the ;what do you do' question and this time shared a more appropriate amount. He simply said he'd heard I'd had some difficult times and that was that.

Christina Bruni

5/12/09 9:09pm

I wrote in my other blog, Joyful Music, on my author web site about what happened to me three months ago. I was walking to the hair salon wondering what would happen if I told my stylist I have SZ. As I sat down in her chair, she told me, "You are an impressive woman, really, you are impressive." I had no idea what she was talking about until she told me she was researching mental health on the Internet and came across my Connection blog. "You write so well, you should go to journalism school," she told me. I couldn't resist asking her, "But if you didn't know I had SZ, you couldn't tell?" "No," she said, "You can't tell from looking at someone."

OK, I have no idea why my experiences with disclosure have been atypical. I have a close friend whose friends all abandoned her when she was diagnosed with SZ. They had been her childhood friends and they stopped being friends with her. I'm sure once my memoir is published most people will accept me however the most unlikely people will be closed off.

I don't think it's appropriate to disclose because when you do that places a burden on other people who might not even want to know your story. You feel the need to be honest, yet that could backfire. I generally tell no one yet the reality is most people know or have easy access to finding out via the Internet.

Right now as I type this, I'm alone in my messy living room filled with packing boxes and bags of donations to send to the Salvation Army. I do this quite simply because I feel I must, that it is my duty as a recovered person. Everyone in recovery has to decide for himself or herself if they want to quietly go their own way or be an advocate for others. I respect a person's right to be a self-advocate and keep their experiences private. However, it is for me a calling to express myself this way: through the Connection blog, and the SZ magazine column, and with my memoir, Left of the Dial.

This is all I'm going to say about this topic for now. I would rather hear from you. Specifically I'll toss out the question: When is it appropriate to disclose in a relationship, for instance? Do we hold out the hope to be in a LTR with someone who doesn't have an MI, or do we gravitate to others who share our experiences and have [hopefully] a built-in level of understanding? This of course presumes that someone with an MI would naturally be more compassionate. We all know that isn't always true. People are people and have their own quirks, regardless of whether or not they have SZ.

I would definitely disclose when things got intimate. I wouldn't wait until I was walking down the altar; I'd tell the person as soon as I felt there was a level of trust and empathy.

Christina

David Robbins

5/13/09 5:42am

I want to add a few lines to this discussion.

OceanBlue wrote that their family doesn't talk about their "illness." My family doesn't talk about mine either. I've accepted that and moved forward.

Margaret and I have been married 9 years today. The best years of my life. Margaret doesn't have a mental illness. Despite that she is always by my side. She looks past my 'illness." She never told her daughters, but they know, accepted it and are family.

My last job I left my comfort zone. I had worked as an outpatient at the Binghamton Psychiatric Center (BPC) for many years. I left BPC to work in a "normal" job. Alot of my coworkers knew I had SZ. I proved to myself that despite my "illness" I could do a great job....and I did. To the naysayers that once were my coworkers that shunned me..I say shame on you.

My goal is the help the "normals" understand. In the end it's up to them. All I'm doing, is saying to them "the way you see MI's isn't the way we are."

Dave

,

ysraal

5/13/09 7:17pm

Dear Sister christina, I am still on my job and when I first applied I disclosed but I did not disclose my dx. my boss has asked me and i just told him that by law I do not have to reply. So far he has not bothered me and I am the only dishwasher left out of 6 that started when the restaurant opened. i work in an area by myself, talk to my voices my way and drink my water and when my shift is over, I go home. My boss has given me all the time i need for med appt but i am sure that i am being discriminated against because i do not work as many hours and I have not been given a raise even though no one has been there as long as me.

Don Fraser

5/14/09 12:20am

I believe that disclosing to anyone, even an intimate friend, is a personal,ethical, moral decision. The consequences of your words or actions must be your own. Of course if someone "finds you out", so to speak, you have no control. But if the words and actions are your own then the cards will fall as they may.

Good or bad, the experience of disclosure or non-disclosure will teach you something.

Let me give you an example from my life:

After I had been psychotic for a number of years, I returned to my old home town in the country. I called up my best friend from school. We talked for a while, and then I told him where I'd been and what I'd been doing for the last few years. He abruptly ended the conversation. I never saw him again.

Once "the word' was out, almost all my old friends (male and female ) shunned me like I had the plague.

Then I realized something. These were the people that I used to get high with.

One was a drug dealer. Another a drunk. At that point of my illness I was better off without them. It was a gift.

So being responsible for disclosure led me away from drugs, which would have made me much sicker. Today I have real friends and a good life without street-drugs.

And I feel happy about that decision that I made, even though it hurt at the time.

Don Fraser

Merely Me

5/14/09 2:53pm

Hi Christina!

This is a very good question. My mother has schizophrenia and I remember how hard it was for her to make this decision. In some ways I wish she would have disclosed more...like at places of employment...to help them to understand her behavior but then again she may have been discriminated against.

I always had a hard time with this growing up with my mother...who to trust to tell? My grandmother always told me never to discuss my mother's mental illness with anyone...to keep it a secret. So I grew up with that mentality. But now...I think to de-stigmatize mental illness...maybe it should be told more.

I wish the world were a perfect place where disclosure would mean more acceptance but...I don't know if we are there yet.

Great discussion you have going on here...I will definitely be back next week for more!

Donna-1

5/16/09 5:59pm

I was at a fabric store a few days ago, buying sewing materials for my mother's classes. The clerk was busy with two other people, so I sat down to wait. One of the other people came and sat across from me and started talking. She asked the almost inevitable question, "What type of work do you do?" And I said, "I don't work. I'm fortunate that I don't have to -- I have enough money coming in." My usual line. Normally they say, "That must be nice," and I think that if they knew the whole story it would not sound so nice. Then she said, "I don't work either. I am on disability right now but only for 4 months and I am at the end of that 4th month." She went on to tell me about her panic attacks and how they made it impossible to work. So I told her I was on disability for a mental illness. And I told her to apply for SSDI and explained the laws on how much a disability lawyer can charge. She was very grateful. But later, I wished I had only given the information about SSDI and not disclosed that I had a MI. I'm not sure why. I felt I had exposed myself to a stranger and was glad I didn't give her my name.

Carolyn

Question of the Week - Disclosure

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