Why I Write About Mental Illness

This blog post is a little different from previous ones.

An essay I wrote for Real Simple was picked up this week by CNN. I was pleased that a story about a serious issue — mental illness — was getting attention. My ex, who I’ll call Mike, developed bipolar disorder after we’d been together thirteen years. I spent another five years with him, trying to make him take his meds so he’d stay well. He didn’t. I took Lizzie and left — Mike’s untreated illness had made him a danger to us.

I write about Mike because I got a firsthand look at a mental health system that’s broken, and far too many of the most vulnerable fall through the cracks. Mike did. I write about my experience of seeing someone I once loved fully and deeply change into a stranger because it changed me. I write about mental illness because, after I “came out” about Mike’s illness to friends and acquaintances, I was astonished to find out how common it is, precisely because it’s not talked about. But mostly, I write about it because I have to. There’s an almost burning need to share our experience.

It’s been eleven years since I left Mike. Everyone who knew us back then knows about his illness and has seen him deteriorate. I can’t sit silently by and whisper, “Poor Mike.” That doesn’t do a whit of good. Instead, I have to put fingers to the keyboard and get our story out because I can’t sit by and do nothing about mental illness. I can’t cure it. I can’t fix the system. But I can write about it. I can tell my story.

When I logged on to CNN and read some of the comments, I was surprised at some of the vitriol. I know I shouldn’t be. I’d already learned firsthand about trolls — when Salon published an essay of mine for the first time, the editor told me she warns writers not to read the comments. We all know that it’s easier to judge and express rage anonymously rather than expressing legitimate concerns using a real name. So I thought I’d address some of the recurring comments.

One thing that struck me was that so many people didn’t seem to know about how bipolar disorder can vary and that it can present differently, especially in severe cases. This, to me, is yet another indication that we need to talk about mental illness instead of keeping quiet about it. Mike, after several misdiagnoses (which is apparently common), was given a diagnosis of bipolar disorder about fourteen years ago. He’s been in and out of hospitals and has seen different psychiatrists. They all agree on his diagnosis. But apparently many on the internet, who’ve never met Mike and are most likely not psychiatrists, know better.

I was stunned by those who kept chiming in about “What about her wedding vows: in sickness and in health?” When I was married to Mike, I took those vows seriously (as I do with my incredibly wonderful second husband). I spent the final five years of our eighteen year relationship trying to make Mike better, taking him to doctors and pleading for him to stay on his medication. That’s an awful lot of “sickness and health.” But vows take two people. Mike repeatedly went off his meds. What happens when the person who has bipolar disorder refuses to do his part to keep himself “in health?” What happens when they refuse to take them not just for themselves, but for me and for their daughter?

It’s an interesting question, though: whose responsibility is it if a sick person refuses his meds? If they’re sick and refuse to take part in their recovery, are they responsible for their choices? If Mike didn’t think he was sick and didn’t take his meds, whose “fault” is it? His? Mine? An inadequate health system that flings meds at people with mental illness, hospitalizes them — but only if they’re a danger to themselves or others, and only until they’re stable — and releases them without followup healthcare? Would the old Mike, pre-mental illness, choose to be unmedicated? I truly can’t imagine that. Ultimately, I had to protect my daughter and me. And I’m confident I made the right decision, as I wrote, in this essay.

The fact is that Mike’s mental illness doesn’t just affect him — it affected me, his daughter, his parents, his sister, his relatives, his neighbors and his friends. Mike’s mom has stuck by him and has spent both massive amounts of time and money attaining legal guardianship. She should be at the point in her life where she gets to enjoy herself and her grandkids rather than worrying what will happen to Mike in the future.

Some commenters mentioned, validly, about Lizzie appearing in the photos. We discussed it with her beforehand. She has a say. She also knows about Mike’s illness — I’ve been open with her about mental illness in an age-appropriate way from the time we left. I never want her to think mental illness should be stigmatized.

I can and do ignore trolls. Writing about mental illness it too important to worry about what others say. I don’t have time to fall into the troll pit. And I’ve been truly floored by the many emails and messages I’ve received from people who’ve gone through something similar. If my essay made even a few people feel they were less alone, then it was worth it.

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  • Bethany

    Thank you for writing this, Sue. Mental illness and the issues surrounding it are complex and deserve knowledge and sensitivity. I’m sorry to hear people were so critical in the comments. Speaking from experience I will say to those who haven’t been through it that you might not fully understand just how much the off-medication mentally-ill parent affects the children in their families.

    • Sue Sanders

      Bethany, thank you. I value your perspective so very much.

  • dilleysb

    Please keep writing about all the things you feel strongly about, including the endless toll mental illness exacts from all of its victims. While various cancers, -itis(es) and other non-emotional diseases attack and destroy the body, mental illness seems to target the soul, wrecking the unique personality of the identified patient and draining the joy and life-force of those with close ties. I noticed many of your unhappy commentators also suffer from bi-polar disorder and their fear is apparent in their postings. “Will I never be well?” “If I recover, will I be allowed to have a life?” “What (and who) else must I lose to this crummy disease?” That, in the end, is what emotional illness does: it isolates people, (both the identified patient and the loving friend or family member) and destroys their ties to society, each other and finally themselves.

    That’s why your article and those like it are important. Writers reach out to the world with their words and reading brings a surcease from loneliness, even if readers don’t like what they’ve read. If the disease brings isolation, then communication can ease that symptom. And if communication leads to learning and action, it’s more than just an aid; it’s a bloody miracle.

    • Sue Sanders

      Oh, dilleysb — your comment made me cry. I truly feel for some of those commenters. But the fact that they know they have bipolar disorder and they’re living successfully with it is huge. I wonder if Mike’s prognosis would have been better if he’d tackled his illness like some of the commenters have. He still doesn’t think anything is wrong.

      It can be a cruel disease. And, as I mentioned in the article, after I “came out” about Mike’s illness, I discovered it was so common — and that many people either had a mood disorder (and were living successfully with it) or knew someone who did.

  • Kam

    I don’t think it is fair to call the people who were hurt by
    the representation in your article trolls. Your article hurt many people, likely
    far more than it helped. Does that make it worth it?

    • Sue Sanders

      My intent was not to hurt anyone; it was only to tell *my* story: what it’s like to see someone you love sink into mental illness and be convinced he isn’t sick and doesn’t need help. My story has a happy ending for me and for my daughter. It is our story. Mike’s story could have ended differently. He still, after 17 years and multiple hospitalizations, doesn’t think he has bipolar disorder. It seems that many commenters know that they do, which is *huge.* They know they have it and they’re taking steps to live successfully with it. I wish Mike’s story was similar to theirs. But how can you successfully live with bipolar disorder if you don’t think you have it?

      Please look at the comments. What would you call someone who calls me a “bitch”? What would you call someone who calls my daughter the same word? If that’s not troll-like behavior, I don’t know what is. As far as “hurting more people than it helped,” I think we’re going to have to agree to disagree. It’s opened a dialogue about mental illness and awareness is a good thing.

      • Samantha

        Thansk for the reply 🙂 I think a dialogue is good. There is nothing wrong with making a choice and believing in it. I don’t think anyone should judge someone elses choices. When I read it, I
        just felt it blanketed mental illness negatively, however, it does seem like your experience with it was a negative one and so it is a fair representation. I am someone who suffers from depression and AHDH and am therefore very sensitive to some of the negative aspects portrayed. Maybe it was not the article itself but
        along with some of the comments about mental illness, it was painful for me to read and know people thought that way.

        I am a forensic accountant and it was so hard to get to
        where I am today. I never knew why everything seemed so hard- I just thought I wasn’t trying hard enough. There are a lot of beautiful things that come out of my illness. There are also terrible and sad things. The most terrible and sad thing, however, is that I have to hide it. I don’t want to – I want to be able to say “hey, I fight this battle everyday and look where I am today”. Sometimes I am just afraid that articles highlighting negative aspects of mental illness will only reinforce the reality that I will not one day be able to be openly tell my employer, partner, friends and family, that
        yes, in fact I do have a mental illness and that it is ok to have one.

        • Sue Sanders

          How awful about having to hide your depression. I would imagine it must be like hiding a part of yourself — and that must be truly horrible. It sounds like you’re doing very well, which is *great.* As I’ve mentioned in my article and in this blog post, acknowledging illness is so important. Mike did not think anything was wrong.

          And yes, dialogue is good. But I’m a little confused about how you think my essay portrayed mental illness negatively. In it, I mention that when I finally started talking about mental illness with friends and acquaintances, I learned how common it is. I write I discovered that quite a few friends and acquaintances have depression and bipolar disorder and live successfully with it — until I spoke with them, I had no idea they did. They are the norm. Mike is not. I was honest in the story about my preconcepton and ignorance of mental illness — I mentioned that I first felt shame when Mike’s diagnosis was changed from “depression” to “bipolar disorder.” That’s not portraying it negatively; it’s being honest about my misconception. In the essay, I mention that I discuss mental illness openly and honestly with my daughter so she’ll never think it should be “hidden” and something to be ashamed of. I’m truly curious: how this is a negative portrayal of mental illness?

          As far as the comments — I tend to stay away from places where people call each other names. That’s just not helpful to any discussion.

      • Quyll

        That was truly horrible. I noticed one of the comments about your daughter was removed, thank goodness. Hopefully the others were also.

        • Sue Sanders

          Yes, it certainly wasn’t a Miss Manners moment. Glad to hear it was removed!

    • Embee

      What an incredibly self-centered comment, as though your feelings (and you have no clue whatsoever who was hurt or helped by the post) are more important than others.

      Silence and the feeling of isolation are harmful, not information and sharing. No one who is married/partnered to a person with mental illness is going to leave that person because of Sue’s story. People agonize over that decision and anyone who is in the predicament knows very well that their situation is unique and does not follow a template: Sue’s or anyone else’s.

      How dare you shame Sue for sharing her story.

  • Robin

    The trolls’ words say much more about them than they do about you. Glad you wrote what you wrote. XO.

    • Sue Sanders

      Thanks!