Who Says Honesty is the Best Policy: Admitting My Illness to Others

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?

Advertisements

My First Birthday in Years

I prefer my cake without your spittle, but thanks.

I don’t know when it started, but I suppose it makes a lot of sense. I have spent most of my life developing a strong sense of self-hate, embarrassed by my existence, judging my lack of “lived” life and goals, and basically despising myself for being alive. So the idea of celebrating my birth and continued existence in this world with a “year to grown on” has always seemed silly and hypocritical.

I don’t really like holidays in general. There’s a part of me that gets so nervous: there’s all this pressure for that day. Like, on New Year’s – this is THE day out of 365 that I’m supposed to reflect on my life goals and make plans for the future? Thanksgiving – ugh. Here’s a day, out of 365, that I was supposed to stop, look at all the people around me, and think of all I had to be grateful for and how lucky I was and how others deserve the same but do not have it? What an IMMENSE amount of pressure for a day. It always seemed to me those days should just sort of happen throughout the year, in random moments rather than set times.

So I have a tendency to avoid those kind of holidays or at least avoid them until the last possible second before everyone arrives and I have to put on my clown costume and smile. The only ones I did like were these “holidays” my mom called “Just Because” days. When we were growing up, she would wake us up and tell us we could sleep in – we didn’t have to go to school. And then we could hang out with her that day – I don’t even remember what we did. But given that she worked quite a bit, it was so special to have the day to spend with her, no matter what we did. And it wasn’t on a specific day – it was just a random day (at least it seemed for us) where we got to make that day special and have fun.

But my birthday – that’s the worst of all. After spending an entire year running from my desires, being lonely, hating my body, my face, my personality, my life. After a year of feeling as if I am missing opportunities to grow, to experience, to find joy. After a year of and wanting, waiting and hoping to die. Well, after all that, the idea of getting together to “celebrate” me just seemed rather depressing. Woohoo – another year wasted; another year of burdening others; another year of pain! Here’s to the next!

In fact, if anything, my birthday has come to serve as a horrible marker in my depression. It was a day were I reflected on where I was, who I was, and how incredibly miserable I was in both of those dimensions. Unemployed, overweight, living at home, miserable, unable to leave the house. Perhaps not the best circumstances to “reflect” on. Also, during my depressive episodes, my birthdays have always served as expiration dates. A month before I turned 30 was the first time I decided I was going to commit suicide. I decided I would not turn 30 being the person I was. I panicked and made the minor (but helpful) “mistake” of telling some people. I began ECT a few weeks after my 30th birthday. About a year and a half ago, I sat my mom down and told her that if I was still in as much pain as I was then when I was 35, I was going to end it. Not because she didn’t do enough, not because I didn’t love her, but because I was tired and that just seemed like an age where it seemed fair to give up. (Needless to say, she disagreed with my “thoughtful and rational” idea.) Sometimes I tell myself that if this medication stops working and I hit rock bottom again, I’m not doing this anymore. I’m just too exhausted to keep trying.

Therefore, I have adamantly protested any “celebration” on the day of my birthday. In the past few years, we have agreed to stop mentioning my birthday on the day of. My family promised not to say anything or send cards. I might get a “gift” in the mail the week earlier or the week after, but with no acknowledgement of the birthday – more of a “love you” gift. My friends are harder to tame but given that I live 3,000 miles away from them, it does make a “surprise” party harder.

So, I am turning 34 in two and a half weeks. I’m not going to have a party. I don’t plan on making the day a romp around town, treating myself all day to elaborate “pleasures” of food and beauty. I’m not going to try and dress up or put on extra makeup or spend the day reflecting (ok, I probably will but I’d rather not.) I am not planning on blowing out candles and will not be making a wish. (I’m still not ready for “optimism” or thoughts of “the future.” Baby steps, people.)

But I think it would be nice to go out to dinner somewhere comfortable where I enjoy the food. Maybe I’ll make a yummy vegan cake and once again laugh at why everyone is so surprised when it tastes good. Maybe I’ll let someone take a picture of me, even if I know I’m not going to like it. I’m going to try and pick up the phone if someone calls to wish me a happy birthday. I’m going to thank people who email me. I will open cards and appreciate the love within them even though it is still a struggle to not protest their thoughts.

I think I kind of hope people wish me a happy birthday this year. Because while my life is still a chaotic mess of confusion, chaos, and clusterfucks – and while maybe next year I won’t want to celebrate – for now, I am grateful for the people around me; for the opportunities of growth I have had this year; for the strength and personal compassion I have found within myself; the decisions I have made; and the way I have handled disappointment and stress.

Happy birthday to me.

My Failed Attempts at The Pursuit of Happiness

This is not only the kid from the movie

This is not only the kid from “The Pursuit of Happiness,” he is demonstrating my feelings on finding happiness.

Every time I see my therapist, she asks me what I’m going to do between then and the next time I see her that will make me happy and bring me joy. And every time, I come up blank. I can list things that make me feel productive, helpful, or good. And I suppose in a way, those things make me happy. But like I tell her, happiness to me is a fleeting emotion. Contentment is what I think we are all aiming for. After all, contentment implies an acceptance and peace with the life at present. While something might give you a kick of happiness, contentment means you are okay with your life, warts and all. Maybe you still have dreams, and you still want to move forward and achieve things but when you sit down and look at your life you think: “Yeah. Not too bad. Good job self. We should rock out because things are what they are and they are good.”

Ok, so I’m not really content either. But I felt so sad when I couldn’t think of anything that made me happy. I think part of it is because of where I live, the fact that I do not have many people my age with my shared interests around me, and because it’s so much easier to do things because you are supposed to do them, than because you want to do them. With choice of your actions, comes the stress of fear and failure. What if it’s a bad decision and I don’t enjoy it? What if I do something wrong or embarrass myself? What if others look at me and think I’m pathetic? I’ve always had so many fears, some instilled by my family and friends, others created by me, that have held me back. I’ve spent the last three years just trying to stay alive – so I’m a bit thrown by this idea of doing something that I want to do not because I have to, but because I want to and because I know it will make me feel joy or strength or confidence.

In the past, I think I did things I thought I should do rather than things I wanted to do. I mean, we all have to do those things. Sometimes I need to cook, keep the house clean, get books from the library. And I enjoy most of these things – but do they provide me with happiness?

In the past, going to work was also on that list. I liked people-watching but in retrospect I think it had a lot to do with being depressed and being curious to watch others around me that seemed to have their shit together. I enjoyed public spaces because I could step back and see how unique and odd we all are. I liked museums because certain art makes me feel something deep inside me, but I always felt so sad afterwards. I actually think a lot of things that would give me happiness, have in the past brought me down hard afterwards. The feeling could never be sustained.

So I look at my life for signs of happiness. I mean, I enjoy spinning but does it make me happy? It makes me feel strong, accomplished, and I get a little endorphin kick for the day. I like hiking but I never do it. I like walking around the city but I don’t live there so I rarely do that as well, and with my knee, it’s not as fun as it used to be. I used to really enjoy giving platelets but evidently in the area I live in, the nurses are just unable to find my veins and give up on me way too easily. I enjoy a good talk with a friend or a successful social encounter, but those seem so fleeting and usually leave me coming down, exhausted and nervous about the fragility of the future conversations.

As my therapist continues to ask me this question and I continue to look at her with a wincing face of self-doubt and frustration, I am truly trying to figure out what my barrier is that is blocking my mind from finding something that I could do to make me happy. A part of me knows it’s out there. I imagine it would be something simple – I tend to roll that way. Maybe it’s something I’ve done in the past but given all of my worries, anxieties, and self-doubt, I’ve never really been able to feel the full effect of the deed at hand. Maybe I haven’t found it yet – it’s waiting for me to take a taste and understand that it’s what I am meant to do when I need a little extra “jazz hands” in my day.

I want to find things that make me happy. I imagine as time goes on, especially if and when I begin to work again, I’m going to need things in my life I can turn to for relief – and not just the gym or volunteer work. Or maybe those things?

I’m jealous of those who have a passion. I can see it when they are talking about it – that high they get from whatever it is. For one friend, it’s running. She doesn’t do it to stay fit (though I’m sure that’s a side perk) but because she truly enjoys it. Before, during, and after. My mom even has something – she just loves to garden – I don’t get it, but it truly gives her pleasure. It’s adorable but frankly I find it quite dull.

Do you believe in the idea of happiness? Joy? Contentment? Are they different things to you? How do you define these ideas? And more importantly, what do you do to find them? What do you do for pleasure? If you had a day ahead just for you, what would it look like? What do you do to make you happy?

I guess all this thinking of happiness makes me feel empty, boring, and melancholy. After all, isn’t life about the pursuit of happiness?