Mental Illness: Realities, Biggest Misconceptions & Ending Stigma

Hi lovely readers,

Happy Friday. It’s been a long week – probably one of the longest of my life. I am so happy it’s almost the weekend and I hope yours is as restful as I’m hoping to make mine.

Today I’m going to talk about mental illness, particularly the more ‘severe’ varieties, and what the realities are and what the misconceptions tend to be with regards to what can be expected of their lives. This is based on my own experiences as someone living with Bipolar 1 and complex PTSD, and on my own research via the internet, working with my psychiatrist and therapist, and years in outpatient and inpatient programs.

The first thing I’m going to discuss is manageability. The misconception: It’s unmanageable and life ruining. Another misconception: You will reach a point where it is always manageable if you try hard enough and take the right medication and go to therapy. The reality: It is sometimes highly manageable and you will have periods of being as capable or even more capable than ‘normal people’ because of the resilience you have built, but there will always be periods where everything is utterly chaotic and painful. Sometimes my medications work fantastically for a long time – and by a long time this has historically been about 8 months. That is not true for everyone; I tend to process medications very unusually and experience a wide variety of side effects. I also deal with health issues such as anemia and substance use disorder, so historically I have times where I cannot seem to get enough iron and I am so fatigued I do not function, and when I am sober as I have been for the last while I typically am physically more capable of maintaining my responsibilities and occupations (but sometimes, sober or not, I am still exhausted and feel utterly unwell and unstable). But let’s say everything has normalized and I am sober and consistently on the same medication and feeling really positive about all the elements of my life, from relationships to school and self care. Suddenly, I start having difficulty sleeping, for example, as the vast majority of people with more severe varieties of mental illness often do. I get an hour or two a night, for reasons no one is sure of, and I can’t remember what I’m supposed to be doing anymore, I can’t push my body to exercise, I can’t hang out with friends anymore because I’m barely coherent. My mood goes to shit because I’m irrationally fatigued and emotional and I have drastic swings.

Eventually, assuming I am with it enough to even remember to go or have support in getting there, I get to see my psychiatrist, who is at times available to me once a week and at times once every month. He changes my sleep medication, and I start sleeping again. For about another week my sleeping schedule is absolutely fucked and I am still exhausted all the time because of the sleep debt I have accumulated. Or I see my therapist, and we discover that I’m not sleeping because I am having a PTSD flare up and my nightmares are unbearable and I am afraid to sleep. It takes an indeterminate number of sessions to work through what is coming up from the past in my mind and causing this flare up and eventually I start sleeping again, followed by the same rhythmic issues and left-over exhaustion.

This is just one example. Sometimes, and I really don’t know why, and science sort of knows why but only in some cases, my meds just stop working. I become manic, or I become severely depressed. Either way, my life becomes unmanageable and I feel terrible (or really great, but also like I am immortal and like every idea I have ever had is a good one – which is only kind of funny with hindsight. I have to find ways to laugh at these things). Then they have to be adjusted, and while they are being adjusted there is either a waiting period where my dose of the new medication isn’t high enough to do anything or we simply try the wrong thing, because who knows what’s going to happen without being on it for a while, and I feel worse or only marginally better and then I have to wait a little longer to be sure that in fact I am going to continue to feel bad on this med.

I live in a sober house at present, and I just went through a major medication adjustment because I was tired all the time and painfully sad and my ability to push through and meet house standards simply waned and eventually went out the window. Then my medication adjustment caused me to stop sleeping and my ADHD medication was reduced at the same time, so I was literally a walking zombie. I still don’t feel like myself and now I am getting sick, which makes sense – this morning I asked the staff here to tell me how many flags I have for day programming so I wouldn’t have to sit downstairs and sleep with a book on my lap and wake up and pretend to read it. I have had repeated meetings with the head of my house here, who I adore, but who said something that really bothered me in our last pow-wow (which was already upsetting, as frankly there have been one too many meetings about how mentally ill and difficult of a client I am given that I have yet to actually get enough ‘flags’ to be even close to being asked to leave). She said “there are plenty of people with your mental illness who manage their lives”. In the moment I cried and I lamented about how hard it is to be bipolar. But upon reflection, I have two questions. Who and where are these 23 year olds who’ve been living with Bipolar 1 and complex PTSD for a total of 4 diagnosed years who are just killing it at life? I have met other people with my disorders, but I met them in impatient. I also met them at outpatient where typically they were struggling as much, and sometimes more than I was. I google them, and I find results about people in their 30s and 40s who have indeed created lucrative and happy lives but who still express how inconsistent and challenging their mental illnesses are. The people I admire who have found success living with my disorders talk about being hospitalized, sometimes multiple times a year, for years upon years.

This isn’t meant to be bleak at all, actually. The people I’ve read about succeeding while coping with severe mental illness are incredibly inspirational human beings. They are innovative, creative, brilliant minds who have not only achieved a lot by societies standards but also made massive strides in reducing stigma and opening the world up to conversation about Bipolar, Schizophrenia, Autism, etc. I have no idea if I will ever do anything like that, but I admire those people deeply, and when I am not being told how inadequate I am in times where I am incapable of presenting the way I did a few months prior, I am really damn proud of myself for the perhaps relatively small but meaningful things I do. I am in my final semester of my undergrad and I am going to pass. I scored a 170 on my LSAT two months ago. I am goddamn sober now. I write posts for my blog about mental health and receive messages expressing that people feel less alone and like they’re learning something. I am not my illness, I am my illness and I am a good person who tries really fucking hard and who deals with more than your average human but who is making something of her life in spite of it, and sometimes, because of it.

I am not saying these things to brag, or to boost my own self-confidence. I am saying this because I think we are talking more about mental illness, but I think we are talking about it in the wrong ways, generally. I live in housing for concurrent disorders and I am receiving feedback that tells me I am a disadvantaged and potentially inadequate, sick person. That is not support. That is not open dialogue. And I know I am not the only one hearing this at home, at work, from school, etc. and having difficult not internalizing it.

Support is a combination of a lot of things. It’s making accommodations where necessary, without singling people out. It’s positive reinforcement, not negative. It’s opening the floor up to people who need to talk about what’s really fucking hard and what’s also going kinda great. It’s letting people know what you see as being wonderful about them, challenging them to find out what they can achieve if they apply themselves, and it is not pointing out where they are letting down the team and highlighting how frustrating it is to have them in your home, workspace, classroom, etc. If a space isn’t safe for people with textbook severe mental illness, don’t pretend it is yet. And realistically, our entire society isn’t that safe space yet. 

Every world mental health day I see discussion of anxiety and periodic depression, and everything else is still too stigmatized to even mention on instagram or in a tweet. The best way to overcome this is for people with mental illness to speak up, and for people who don’t suffer from it to sit down and listen – that is, if we really do have the goal of an accepting and more functional society. I walk around Toronto everyday in a state of shock, because in my neighbourhood I see hundreds of homeless people, most of whom are suffering from addiction or mental health or a combination of both. I am in shock because mental health funding is still so poor, we have made so few strides to talk about the honest realities of what is needed to lift up and support our mentally ill friends and family and coworkers and classmates, we have year long wait lists to see a therapist and 2 year wait lists to see psychiatrists. I see those people walking aimlessly in the cold, and I know I am no different than they are, I am just privileged. I come from a wealthy family who can pay for me to see a therapist twice a week and go to process groups and who had connections that got me into a psychiatrist as soon as I exhibited symptoms of my bipolar and who could send me to addictions treatment 3 times so I could stop killing myself with drugs. It was there that I even found out about the few free resources there are for people like me, and through attending NA meetings and process groups I met most of my friends, who keep me from feeling alone and love and support me no matter my state, in exactly the right ways most of the time. Because they understand. And because when I hang out with them, nothing I say is taboo. No story of trauma or an episode is too fucked up to acknowledge, and when I tell those stories, they don’t tell me I’m too much or going to be sick and institutionalized for the rest of my life. They remind me that I’m a nice person and I’m achieving a lot and I’m going to be okay.  But I am lucky and I am in an unusual position, and it’s still goddamn hard. So no wonder our society is such a mess of poverty, alienation, sadness and addiction. Either everyone steps up their game, including those of us who are mentally ill and in a position where we can vocally express ourselves, and including everyone else who, given that most of us possess empathy and interest in other people, lives in our country and has an interest in bettering the lives of people who might not have it as easy as they do.

Basically, we need to talk, and we need to do so without belittling, speaking without experience or research, failing to listen, and with the intention of supporting and encouraging in a knowledgeable and understanding way.

Lots of love,
Liz

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