Sometimes I wonder if I have just become my illness. I know that there are other aspects of me, but, how can I separate my mental illness from myself and just say “oh yeah, I have schizophrenia and it is no big deal.” I guess after living my life for so many years in denial of having the dreaded schizophrenia label, I know I don’t want to go back to pretending like it isn’t a part of who I am. Is it so wrong that it consumes me? And, I don’t know, am I consumed by it?
I guess I think about it a lot. How can I not? Everyday I sleep so much from the meds and everyday, several times per day I have to take the meds. My therapist tells me that I probably should NOT tell people right up front that I have a mental illness, because people won’t understand and then they won’t want to be friends with me. I don’t know. What should I do then? Wait until they are my friend and they could hurt me even more by leaving because they don’t understand what it is to have a mental illness? What if I had been struggling with cancer for the last 20 years instead of mental illness. Surely most people would mention that to people, so why should I take on a coat of shame that isn’t mine? I know, I know, maybe I should be sensible. I can’t change people, but then again, how am I supposed to change myself?
I feel like if I don’t tell people then I am pretending to be someone that I am not. Is it even fair to ask if I am my illness? It isn’t like my brain and its malfunctions can be separated from who I am. But just because I happen to have schizophrenia, it doesn’t mean I’m irrational, illogical, stupid, slow, anti-social, emotionally stunted, incapable and whatever else people might think. Is that what people think when they hear the word schizophrenia?
If anyone is out there reading this: could you tell me what you think when you hear the word “schizophrenia”? Should I be afraid of saying it out loud?
kristinbell.org 
that was a great account of your life. I have thye same thing,but mine is OCD. I agree with what your doc said unless you have a problem with your schizophrenia while you were with your friends then why would you tell them. Your a normal person kristen,but if you tell someone right when you meet them you have schizophrenia they might be weirded out. They wouldn’t be weireded out that you have sphrenia,but they might think why does she need to tell me that right when we first met.. everyday with my ocd is a struggle with all the paranoia and doubt,but i just try to fight through it and live my life. Before i would never leave my house and let the ocd get the best of me,but now i try to fight it and go out and do things. IT’s not easy but at least i challenged myself and didn’t let the ocd win. I feel so bad for you with your sleep issues because it’s hard to get up and go and challenge yourself when your so tired. I”ve been on those meds and it’s tough. Challenge the sphrenia because all mental illnesses are our enemies and let’s kick there ass. Hugs
hi
i didnt read all of it , just few lines, but i can understand wht u mean by ‘become the illness itself’
i hav schizophrenia too
Kristen I always enjoy reading your thoughts and watching your video’s on youtube. You are so kind and sweet, and I wish so much you wouldn’t doubt yourself so much. Your an amazing woman, and your knowledge of schizophrenia is amazing! You ask… could you tell me what you think when you hear the word “schizophrenia”? Should I be afraid of saying it out loud? My question would be…what is it like to have schizophrenia? I’m always so courious about how people’s minds work. I myself have a serious panic disorder, and mild OCD and it’s hell, but I try and deal with it the best way I can…some days are better than others…lol. Should you be afraid to say you have schizophernia, NO WAY…..you’re a great person and if somebody is shallow enough to not want to be your friend because of this…then you don’t need them!! Hugs, Jenn
Hmmm. I think it’s a tough call Kristen. While many people don’t even know what Schizophrenia is, many more have preconceived notions about mental illness. I think those that will judge you right away might fall into the more common ‘ignorant’ category. But then is it worth to formulate relationships with such people? Is your time worth wasting on people who don’t care to broaden their little boxes?
Those that you may want to find yourself around; the open-minded, and knowledge-seeking types won’t give a damn, as they will know that it is a PART of who you are. They will also take into account how intelligent, bright and compassionate you are, not to mention admiring you for your great sense of humour! Your ‘friends’ won’t automatically pigeon hole you…..Or maybe they will. It’s a crap-shoot. People surprise me everyday. But it’s definitely worth taking the risk to find those gems of friends who come and go or who we find and keep in the adventure of life.
Don’t give-up and don’t give-in, you know there are plenty of people who adore you…like ME! Schizophrenia is but one aspect to your whole make-up. You are an amazing person doing amazing things and you inspire me all the time.
I love you Kristen!
You might want to consider taking certified peer specialist training, if it is offered in your area. The most significant aspect of the CPS training that I learned is getting in touch with your inner wisdom and helping others to get in touch with their own inner wisdom. That was a theme throughout the course. It was a 5-day extensive training with lectures, small groups and role-playing. It is a worthwhile course for any peer in the mental health field, be it consumer, survivor or ex-patient. It is a good chance to learn about becoming assertive, setting goals and envisioning a better future for yourself and others.
It is difficult to get in touch with your inner wisdom, but it is a good way to get to know yourself better. One way is by journaling and making lists – write down your strengths and weaknesses, your likes and dislikes and write out possible goals for your future. Most of us diagnosed with a mental illness need time to reflect. Visualize what you would like to see yourself doing 5 or 10 years down the line and set realistic goals to reach your potential.
I get what you are saying… I have schizophrenia too.. And I still mostly only befriend other people with mental illnesses. I feel more like myself around similar people.
I don’t know about you, but I can pass for a normal person. As in, if I don’t talk about it, people don’t guess. But still, I feel like I can’t be myself completely around normal people.
I’ve heard sz is as disabling as paraplegia, so to not acknowledge it is difficult. But as a safe bet, keep your relationships with normal people light, and stick around safe people..
That’s my advice.
You are a person experiencing an illnesss; You are not your illness. You are much more than your illness. Experiences can affect who we are, but they are not us. There is a person in there, and she is wonderful. Never forget that.
As far as who to tell and when, I’d take it case by case rather than all or nothing. Some people may surprise you in a good way with how they deal with it. You don’t have to tell them everything. You could also start with a little nugget of general info and see how they respond.
Personally, I find that telling people is a good thing so that they realise why I have certain difficulties. It also helps them see a good example of what a real person with illness looks like and that it’s not as bad as they thought. By keeping it not a secret I can also keep the door of communication open to teach them and overcome stigma. We have nothing to be ashamed of.
Your therapist is likely correct in this case (yes I am a therapist also). Labeling yourself to protect yourself from hurt is self-sabotage, limiting and, actually, is a boundary violation if done with people you have only just recently met socially. There is no easy way of getting through the process of making friends. Sooner or later you will tell them or they will figure it out and then they will make their decisions on the basis of many factors. The only factor which you can control is your own intention. Let them take responsibility for their own decisions.
Btw most people with cancer don’t announce it up front. Nor do most people discuss their sex lives in graphic detail with people they don’t know well. It is not that having cancer or having sex is shameful. it’s just not usually socially appropriate to discuss these subjects with people you don’t know well. Even in the internet age of the tell all blog.
Here’s a way to think about it. Instead of being your illness and announcing to people that this is an aspect of your identity, be yourself instead of telling people who you are. If it comes up in normal conversation and it feels appropriate to disclose your illness to further the relationship then do so.
For instance, if a person you have recently met is disclosing some aspect about their personality that they have had a difficult time with, then you might choose to disclose as well. However if they are talking about an unrelated subject and you draw the conversation to a deeper level of intimacy before they have indicated they are ready for that level of intimacy, they are more likely to back off, because you have crossed a boundary that they were not ready for.
Again, generally, for most casual social interactions, be yourself rather talk directly about who your are.
Thank you guys for all the great comments!!! :)
WOW LMSW very well said. IT just goes to show how good of a person and a terrific vlogger kristen is that she warrants this attention. IF nobody cared there would be no comments.
Hi Kristen
I just found your site and really like it and am looking forward to reading more.