Some say that the key to true advancement (in terms of research and respect,) in mental illness is to break down the stigma and ignorant assumptions currently held in our communities. Many believe this can be done by humanizing the disease; having those who suffer mental illness “come out” and tell their stories; attach faces to the disorders; and speak the truth to deconstruct the myths that pervade.
I have already mentioned my struggle with this action in previous posts. As a civil rights activist, history shows the power individuals can have in changing perceptions and thus enable progress for their causes. Mental illness is being talked about, but I believe those who suffer (with the disease or as a partner/friend of someone who is suffering,) have the true power to guide and change the conversation to address what we in the community want others to know.
And while I fight for other oppressed and discriminated groups, I, for the most part, do not associate with my disease. In fact, I find myself often frustrated by the limitations I feel are caused by this invisible illness and struggle that whether silent or loud, I often feel as if I lose either way.
When I first moved home, I told people that I had come home to help my parents, as they were older and needed help. This worked with people who didn’t know that while my parents are older, they definitely don’t need my help. I also avoided any public situations by never leaving my house. While I was doing ECT, I thankfully didn’t go out much. I tried to start a new job while I was still weaning off of ECT, and luckily I had only been out of work a short amount of time, so I could use the “I wanted to come back to California and be close to my family” as reason for the break in my work resume. As miserably depressed as I was, as sick as I felt, I have to say it at least felt better being able to talk to someone and be living on my own and with a job. I knew I could bullshit and charm the rest of the conversation. But when I quit my job in Santa Cruz and they re-diagnosed me and told me ECT was no longer a viable option, I was fucked.
I wasn’t working, I was living with my parents, my drugs weren’t working, I had no hobbies and no friends, I was once again cocktailing some new drugs for my new disease, and I wasn’t 22, I was 32. See at 22, you tell people you are not working and living at home, and they understand you are saving money and trying to find your way. At 32, people wonder how bad you fucked up.
While I have been living on my own for a few months now, have at least one hobby, and some possible future plans, I still find these conversations difficult. I have started to tell people that I have an illness that I have been suffering from for the past three years. That in fact, I had it in DC and it got so bad I had to come home. I had been misdiagnosed and therefore was still too ill, but the doctors now finally have found a concoction that seems to have quieted my condition for now and I am now beginning to get back on my feet again. It’s horrible, but I think I frame it to sound as if I have cancer or a disease that can be in remission but come back. While it’s true that I do have a condition that is currently being controlled through medication, I will always have it, and it can always come back. It does destroy my life, my body, my future, and can be lethal. So I imagine people think it’s more like cancer because they are not used to seeing depression as a life-long disease that one must constantly fight.
Sometimes I forget to use it, and I end up with the “um…you know…I’m living on my own…looking at things.” Now that I got into the Master’s program, I tell people I’m preparing for that even though I’m not even sure I’m doing it. I have a job one day a week for a few hours and sometimes I make it seem like that’s my “job” and I do it full-time. So I’m lying. And maybe that’s ok because they don’t really care and they’re just being polite before they can talk about themselves, but I feel like a fraud and I realize I am ashamed.
While depression and other mental illnesses get compared to other diseases, I still think it’s validity is ranked pretty low, and so the process of telling someone is different. I do tell a few people about it, but I’m pretty particular with whom I tell. I can usually pick up on people’s vibe based on their reaction and opinions to other issues. If someone is bitching about how “lazy” poor people are, I personally don’t think they are going to like that I am on disability when I seem just fine to them. (I also don’t really want to talk to them because they’re ignorant, rude, and have no idea about the world.) When to tell is a question I’ve explored with friends in reference to dating (which I don’t do, but speculate about a lot just in case I’m ever ready). When is the right time to tell someone about your disease? How important is it for them to know about it? After all, it doesn’t define you, but I know at least in my life, it has definitely shaped who I am.
When I have told people, I have to admit it is pretty hilarious. Damn, do people get uncomfortable. Especially if they aren’t familiar with mental illness or think it’s a crock of shit. It’s like they are trying to pretend they are cool with it with their eyes wide open but don’t realize that the rest of their face has started to slowly droop in slight horror/uncomfortable awkwardness. Their smiles just kind of melt a bit. Some throw out that they know someone who was schizophrenic, or that a month ago they had a really bad week and just couldn’t get out of bed. Those people are sweet. Way off the mark, but definitely E for effort. There are people who nod and perhaps try to look concerned, and then change the subject to “what’s in my future” as if clearly since I’m standing before them, I’m fixed. The best is people who turn into doctors telling me that I should really try seeing a chiropractor or get a sun lamp in my room. ‘Cuz I’ve never tried any other possible solutions in the past and shit, good thing I met you – who knew this whole time while I’ve been lying in my bed for weeks crying and wanting to die, I just needed to use a sun lamp more. I don’t know if it’s being in California, but if one more person recommends a fucking vitamin because my medications are really the pharmaceuticals way of getting my money, I’m going to open-hand slap them. Ok, I’m not, but I’m going to imagine doing it.
See, that’s the thing. Me “standing up” and trying to tell people that the person standing before them, who looks “normal,” doesn’t make them understand mental illness any more than before. When those people try to tell me to try homeopathic remedies and I explain I have tried everything in the book, but that I am missing neurons, that there are chemicals that I do not receive and therefore cannot see the world or operate in it the way they can, they still don’t get it.
Maybe it’s scary to others, but I don’t get why. They know they can’t catch it. I’m pretty sure they’ve figured out that I’m not going to lash out in anger or get on a chair and start singing show tunes. Sometimes I try to push and I explain to them what bipolar II is – I usually make it a joke to try and lighten the mood – to try and let them know I am comfortable talking about it. I often find myself making light of what I’ve been through, which I later berate myself for – because fuck them. Why should I have to tone down the severity of my illness for their comfort.
Yes, I know I am going back and forth. In one paragraph talking about the shame of my illness and guilt to others. And then in the next, telling them to fuck themselves because it’s a valid disease and if they don’t like it they can go find someone else who’s fucked up for different reasons.
I know we have to stand up. I know we have to tell our stories. I know we have to show the face of our disease – to try and make others understand, even a little, about what we face. But I’m telling you, if one out of every four people has some sort of mental illness, than I must be speaking to the three other people.
I am an activist. I believe in education and empowerment. I believe that people who are mean and close-minded, just don’t have the proper information or haven’t seen the issue from a different perspective. I try to give people the benefit of the doubt that inside, they are perhaps afraid of what they don’t know, and especially of what they can’t see. I know what they see on television is a distorted view of the reality, and that the majority of people get their information from their television. I talk to people all the time about policing, racial profiling, gender discrimination, class discrimination, education inequality – and I speak from my heart and I look at them with hope that they will listen, and ask questions, and try to see what I see.
But then I look at mental illness. When I try to put it in the same framework, it doesn’t seem to fit. What am I doing wrong? Is it because it’s so invisible? Is it because it’s so diverse? Is it because there’s too little known? I try to put it as an issue I might train on (I used to train heads of organizations on how to teach their communities about specific civil rights issues) and think about what outreach I would recommend, what language I would use, what stories I would tell. And I know that I would tell people to focus on relatable stories. That facts and figures don’t matter until later. To get people to care, you have to make them feel the issue. To be able to put it in a way that they can understand – put them in the shoes of the issue, so to speak. In fact, I bet you I could write up a training on mental illness and put together some wonderful stories and workshops to help people get more comfortable.
But I know if someone asks me what I’ve been up to, I’m not going to tell them that I have been suffering from bipolar II and trying to rebuild my life. Perhaps it’s shame embedded within me. Perhaps it’s fear of judgement. But either way, I’m angry at myself, sad, and incredibly disappointed. I tell people to do their best to practice what they preach. I’m such a fucking hypocrite and I don’t know exactly why or how to change.
I apologize to all of you. I’m just going to add this to my list of shit to figure out.
What do you do? How do you handle social situations? Do you feel the need to be an agent of change? Do you feel responsibility for the education of our illness? Do you feel that people treat you differently once they know you have a mental illness? Any thoughts on what we should be doing about this?