By muggles I mean people who think they are normal, but what is normal anyway? Do you tell people you have this disease, and why or why not?
On a very need to know basis. I don’t interact with many people outside of work, and even at work i keep to myself. But my fiancee’s parents have been told once, any close friends I make that might be put in a situation where they would have to experience me on a bad day. Generally though, I keep it to myself and I hardly ever socialize.
I’m toying with the idea of just telling everyone. Like Elyn Saks did on TED http://www.ted.com/talks/elyn_saks_seeing_mental_illness
I told a friend of mine over the weekend, she didn’t pass out on me or anything. I just found out I had it, I’ve had it all my life (I’m 48 now), so what’s the difference? Any suggestions or recommendations?
I don’t have any experience with that. Being extremely introverted I don’t put myself in situations where there is lots of people around me if I can help it. And I don’t keep many friends. But it has been my experience that the people who don’t understand something are normally the loudest and with so many people being sheep to the loudest voice around them I feel fear would spread as the reaction of knowing that I am Sz and that would limit my number of potential connections with people and thus my opportunities… (eg. career advancements, friendships, relationships, social event invitations etc…)
But then again I am paranoid and I don’t much care for close bonds with people.
You have to think about the implications - Elyn Saks was a tenured professor - so she couldn’t be fired from her job. So her income wouldn’t be affected.
If you have a very secure job, or if aren’t working and you have a guaranteed income - then maybe that isn’t a problem. This is generally the biggest issue I think that people consider when they tell people about their diagnosis. Many people have prejudice in job situations about people with schizophrenia - and so its helpful to not share that information with potential employers.
Other things you might want to consider are the impacts on family and friends. If you think that might be an issue - perhaps discuss it with them.
I told my nearest family. Some of my friends know that I have problems with paranoia but they don’t know my label. I just don’t tell people cause I live in a very conservative community and people just don’t understand and I’m not prepared to deal with the stigma.
The rule of Hogwarts is that you don’t tell muggles anything about anything that may be considered 'abnormal."
Personally I have done it a few times and it usually ends up with some negative opinion being formed, rumor, etc. One rumor spread that I was a paranoid schizophrenic, when actually I’m schizoaffective. And that is all I have ever told people and I see how it got twisted around.
you’re right, she’s a tenured professor she won’t lose her job. interesting. not fair! I had not looked at it that way. I’d like to go back to work, but doubt it would work, and keeping it a secret causes alot of stress, which triggers it worse, like a vicious circle
I live in a small town. Everyone knows anyway.
“There’s not much to see in a small town but what you hear makes up for it.”
So be it. I make up clever remarks about my sz that throws off the people who would put me down for it.
I am very open about my diagnosis. I got in to my job through an outpatient program and I’m union. So it’s not secret. I’ve told a lot people. Some are jerks and I never have to speak to them again. If I tell them and they run away from me, that’s a few less negative people I have to deal with in my life.
My entire family knows. My two friends know, my boss knows, my landlord knows.
The lady I’m starting to date, already knows. I told her the first moment I saw her, I was trying to scare her away. She had a beloved Uncle who suffered SZ and I don’t scare her at all. She’s already been very patient and supportive. It’s nice having that hurdle out of the way early.
I’ve had a few glitch days that she’s helped me through, so she’s already seen me at some of my worst, and she’s still going surfing with me this weekend.
**In a way, that
s like someone who has any other disease or illness, telling everyone that they have ms, or hodgkins. Most situations, its not necessary. **
I don’t know if I ever looked at it like that. It was pointed out to me that my “overly openness” might be a way to scare people off.
For a while, maybe I did blab it out there to scare people off.
I had a good talk with my Dr./therapist today, explained the situation. Today my friend is concerned I’m ‘off my meds’ and has heard of friends with friends with Sz who have jumped off a bridge! So, my therapists suggestion was to , instead of getting angry and frustrated, say “that is not helpful”, so I’m going to try that, and would offer that out to the group as a suggestion. The disease itself is bad, or bad enough, but the way people treat you is worse than the disease.
I share this one alot, when I ride my bike, when I’m sick, I go past sewer drains, and my brains says “Great!”
l don’t tell normal people, because they would see me as not normal. And judge…
The only people who know are my parents and care team, I don’t tell anyone else unless they earn my trust, to be honest I think the only other people who would find out are any future friends if they see me in a bad state that would need an explanation and my future partner(s). I just don’t think I want to tell anyone because I’m not happy with it myself and I know how uneducated people are as often their only source is the media which doesn’t provide confidence. I’m hoping I find people with a little more knowledge or people open to education before judgement. I’m scared to share basically.
i live near a small country town, i don’t think the ’ muggles ’ would appreciate the truth, but the sheep, cattle and kangaroos are okay with it !?!
I usually don’t talk about it much in person.However I have a blog where I am very very open about my illness…although that is not the only topic of the blog. I also have autoimmune diseases and glaucoma and I talk about those too. A lot o people read my blog…those whom I know and those I don’t. My friends are okay with it. Ido not work (other than writing) and probably never will because of my other illnesses in addition to the SZ. So I don’t have to worry about discrimination. Occasionally someone will discount something I say because of my illness and this makes me angry…I know it is a consequence of being open. HOwever the benefits of being open outweigh that. 1) I don’t have to hide and get paranoid about whether or not people “know” and 2) If I’m having a problem determining whether or not something is real o r is my disease, If I’m with a friend, I can as for their input. No one has been unkind to me…
I came out yesterday. I have a lazy eye now due to, after much testing, a TIA stroke in my left eye. After that what we now know as a stroke TIA, I went crazy about 6 months later, stayed that way for about 2 years. I tried to go back to work, but I had either an episode or another TIA after working for 6 months. the 2nd one was very bad. I may not work anymore either, so I went ahead and ‘came out of the closet’.
I was working in the IT department of a hospital when I tried to go back to work, very stressful work, plus they wanted me to work 3rd shift, sometimes, maybe one day per week, so like 3rd shift for one day, then first shift for the other 4. it was torture, and I finally snapped again.
A good video about Elyn Saks and how she decided to come out about her illness:
Thank you for sharing this, I came out and told people that I had a TIA stroke, and then became crazy, or diagnosed with schizophrenia afterwards. I admire Elyn. I have appled for disability benefits, but I’m also looking for work now that I’ve come out with what happened. I decided it better to explain myself what was going on than endure any stories and bust the false information and eliminate the stigma. If people cannot accept what happened to me, I cannot do anything about it, I’ve had a very successful career so far.
Here is my resume, I have a BS in Computer Science and an MBA, and I pass Elyn’s TED talk around while I explain my story.
Technical SkillsUnix: AIX, HP-UX, Red Hat, CentOS, Solaris Administration, Fedora, Ubuntu, ksh and bash scripting, VMWare, High Availability Architectures, SAN, performance tuning, network configuration and troubleshooting, ssh secure shell, backup and recovery, business continuity planning, Security Audits/Compliance, Tivoli, Firewall configuration, Network and Server troubleshooting, FTP, sFTPSoftware Development and SDLC: C/C++, .Net, Eclipse, Java, VB, PL/SQL , VoIP, WebEx, Windows NT, Microsoft Exchange Server, SendMailDatabases: Oracle (OBIEE and Discoverer), SQL (SQL*Plus and Toad, PL/SQL), DB2, Informatica, Microsoft SQL Server, ETL Tools
Health System 2013
Initiated LEAN methodologies across the five laboratories to improve patient care and quality by streamlining operations for lab orders, send-out lab orders to reference labs, and for billing Insurance, Medicare/MedicaidLed projects to implement Cerner PathNet at the Maquoketa Critical Access (CAH) Hospital
Developed legal contracts for exchange of EHRs, electronic health records, over the National Health Information Network for CMS with the Office of the National Health Coordinator (ONC) Standards & Interoperability FrameworkWorking on my PhD in Informatics, completed coursework in Medicare/Medicaid, Health Economics, Health Care Delivery, and Functional Magnetic Resonance Imaging
Project Manager IBM 2009-2011
Managed projects to implement Watson at Wellpoint Blue Cross and Blue Shield and AnthemManaged project to implement health record exchange from the State of Georgia Mental Hospital to the Georgia State Department of Public HealthLed projects to improve service quality and Six Sigma methodologies to improve customer service across the Deliver Center (help desk through 3rd level support)Led teams of help-desk technicians responsible for security and availability of internet and operational unix systems for New York City Transit System, State of Georgia Department of Public HealthLed teams of technicians performing security audits, risk analysis, managed LDAP directory for user security, unix shell scripting, high availability architecture tuning and management, disaster recovery planning Managed AIX, Solaris, HP-UX, CentOS servers
Project Manager, 2007-2009 Milwaukee, WI
At one of the largest post-acute care health organizations (17,000 beds), led project to improve admissions and census tracking process by implementing Microsoft Dynamics CRM (customer relationship management software) Led large project to implement a call center application to improve process used by administrators during the revenue cycle for Managed Care, Insurance, Medicare and Medicaid, and private pay payers across 9 states (Indiana, Kentucky, Minnesota, Wisconsin, Oregon, Washington, Michigan)
Software Engineer Contractor
Provided .Net and Linux engineering services to build a real-time interface to the existing Federally funded (FFELP, Stafford loans, etc ) student loan processing network (ELM) for the US Department of Education and Department of Treasury. Microsoft Visual Studio (Visual Basic and C#), SQL, Crystal reporting, Linux shell scripting, Compaq batch processingPerformed ETL and data validation using Oracle, MS Access, and MS ExcelCreated LDAP directory for user logonsPerformed Oracle PL/SQL programming using Toad, Linux shell scripting, SQL query tuning, validating Oracle Discoverer and Crystal Reporting
EDUCATIONB.S. Computer Science, The University of ‘my state’ M.B.A San Jose State University, San Jose CaliforniaPh.D. Coursework,Informatics (PhD not completed) The University of ‘my state’