grumpy about mental health stigma (quasi-guest blog!)

I am always amazed by how much stigma is attached to mental illness. Behavioral disorders like ADHD and autism have gained more traction in mainstream thinking, or so it seems to me. If your kid is diagnosed with ADHD or autism, you get additional school resources, special ed help, and access to pretty well-developed resources and support mechanisms. And lots of social support these days. Still not hardly perfect, but better than it was.

But issues like tic disorders, anxiety, and depression are still more taboo, and our children who suffer from them have few rights in school systems, which are sort of bellwethers of social acceptance. Even if kids are diagnosed officially, they’re not entitled to any special assistance or resources in schools unless they completely fall apart and become non-functioning human beings. So parents like me are stuck sort of lobbying and begging teachers to go along with what we say our kids need, and hoping they do it without bringing their own not-expertise to bear (I’ve stopped counting the number of times teachers have known better than me how to handle Jesse’s anxiety issues), which just adds to the feeling of STIGMA.

And we all know stigmatized people don’t exist in a vacuum. Those of us who befriend them, or are born to them as family, suffer along with them.

It sucks, which is why I choose to be so naked about mental illness in my family. We are going to own our crazy, along with our grumpy. Jesse should never be ashamed of being born with a brain that leans the way it does, or of needing help to overcome the challenges her brain and body present to her — any more than a person should be ashamed of being born with a missing limb or green eyes or a defective heart or cystic fibrosis. What is, is. I should never feel ashamed of how difficult it is to be an effective parent for Jesse. But it is a hard, hard thing, overcoming stigmata.

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One of the most delightful aspects of my emotional nudity is the feedback I get from parents who are struggling with their own kids. Some like sharing, some like knowing they aren’t alone, some are relieved to have found a person who can offer a referral to a good shrink. Some just open up and tell me about their own childhood struggles with depression or anxiety. I know it sounds twisted, but I love hearing about it all. I love knowing that I’m not alone, that there’s a thriving cohort of pretty fucked up people out there, getting along just fine.

Just this week I received a very open-hearted private note from a mom Somewhere Else in America. She told me about her own struggles with a challenging, explosive child. It made me laugh a little and cry a little, for her and for myself, for our families and our children. it made me feel less alone, and less of a failure, and also it gave me some ideas to think about. In particular, this mom has used some energy recently to take care of herself and improve her own outlook, which is in turn helping her kids. It’s a trickle-down theory that doesn’t sound or feel like economic bullshit.

There are so many of us drowning in this crazy, crazy world. If only we could speak openly with each other about our challenges, it would all be so much easier. Along these lines, Somewhere Else mom gave me permission to reprint her note, so here it is (with identifying information changed), as a sort of guest blog post. If you’ve ever felt like your kid “takes a big shit on your day” more often than seems reasonable, maybe it’ll help you a little, as I hope my tales do too.

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I would like to tell you a little about myself. I’m a 45 year old housewife from —. I have been married for 17 years and have 3 kids. Eric is 14 and going into 9th grade. Straight A’s super athlete well liked. Harriet is 7. Cute and so sweet. And I have Hayden. He just turned 13 a few weeks ago. Going into 8th grade. He’s smart creative and very funny. He’s also a huge mystery to me. I swear he came out of my womb pissed off at the world and not much has changed. He has extreme anxiety which he tries to hide and has the ability to make our home life hell. He has very dark moods and can be very destructive. He doesn’t hurt others yet but breaks his favorite toys and destroys his room and doors and walls when he has one of his episodes. He usually saves these behaviors for home and especially me. He acts like he hates me often. Probably because I usually have to be the “enforcer”. Believe me I’m as sick of it as he is.

We went to a small elementary school. One teacher per grade. All was good until 4th grade and school life went to shit. He was in the office several days a week. I also volunteer several days a week and the behaviors he was in trouble for were mostly little boy BS. By sixth grade I had enough. Like you I’m not opposed to meds but resistant. My husband comes from a family that believes herbs and diet can cure anything. We tried everything. Nothing worked. They actually tried to cure a schizophrenic cousin with herbs and she ended up in a state hospital for 4 months. My husband was worried that if we got a diagnosis he would be “labeled”. We knew he had ADHD anxiety and was starting to show signs of OCD. I took him to his pediatrician and he diagnosed him with ADHD. Against everyone’s wishes I put him on a non amphetamine med. it was a few months till summer and we agreed we’d see how it worked and take him off for the summer. The changes were minor .

Then 7th grade which is jr high here. Things really took a nosedive. I mentioned his siblings because as a typical middle child he lives in the huge shadow of his super successful brother and became even more resentful of his sweet little sister. His anxiety and dark dangerous behaviors escalated. He made every morning trying to get to school hell. I used to think “he just took a big shit on my day once again”. I think he had a total of 42 absences in first period last year. Several F’s. He started cutting himself. I got the school psychologist involved so we could get a proper diagnosis and maybe get him into a study skills class to help with organization. Big fail. That teacher truly hated him. She would put his name on blank papers and turn them in so he would get zeros. After many tearful meetings nothing changed. At the end of the year we have equivalency exams. He got all A’s. During this time he started cutting himself. Lots of self hate talk but not suicide so no hospital would take him. OCD got worse. He flat refuses counseling. We tried “tapping”. For anxiety. A bust. Acupuncture, nope.

I feel like it’s my fault. If I was just a better mom this wouldn’t be happening. Did I do something when I was pregnant? What am I doing wrong? My patience with him was gone. I yelled at him constantly. I mention his siblings because they are so affected by this too. His brother wants to kick his ass for being so awful to me. My daughter is just scared and cries. My husband says if I were more positive he would be too. Maybe?

I was just feeling hopeless and helpless. I was drinking to cope and said mean awful things to Hayden I am not proud of. Then I got sick. Really sick. I knew something was wrong for the last couple of years but was scared to go to the dr. This summer it got really bad. I lost 20 lbs in 3 weeks and looked like a ghost. My parents made me go to their dr and it was the best decision I’ve made in a long time.

What I have is totally curable but this wonderful Dr recognized something else in me. I was so stressed out. My anxiety levels off the charts. I was having panic attacks. I suffered from these things many years ago but didn’t want to admit it was back. I thought it was just stress. He gave me a few different things but the meds I was so against taking have literally changed my life.

It’s only been a month but I feel like I’m free. My husband said he was so glad to have his wife back. I haven’t yelled at my kids. My patience is back. I feel so positive and motivated. Of all the things I could do to help Hayden I would never have imagined this would be it. I make a point to talk with him often. I’m trying to find ways to get in sync w him so maybe, just maybe we can work things out without fighting. Im still going to keep trying to get him to counseling. The Dr I saw said he would take him on and try to put counseling in a perspective he can understand and not fear. Regarding meds for Hayden my thoughts have changed a little. I wouldn’t love to do it but wow! I am amazed at what a help they’ve been to me in such a short period of time.

I don’t know what your daughter’s issues are and I hope I haven’t offended you in any way. I think as moms we put so much pressure on ourselves to have perfect kids. I just wanted to tell you what has helped me. I have No delusions that this is going to fix Hayden. But health issues and all I am so much happier. I think that’s a good start for my son myself and my family. Hang in there. Life is stressful so are kids and marriage. But we can do it. We have to, right?

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That’s right, Somewhere Else mom. We can do it because we have to. It sounds like you’re doing all the right things. Thanks for sharing your story and becoming part of my lifeline.

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3 thoughts on “grumpy about mental health stigma (quasi-guest blog!)

  1. Thanks so much to both of you for this post. I’m horrified and angry at that teacher. I’m shocked that an educator could be so ignorant, unhelpful and downright cruel. But I guess I should not be surprised. My family also dealt with a very trying teacher situation this past year that even sort of traumatized me and possibly (I hope not) turned my son against school forever. I see both of you as super-people and it pains me, as always, that especially we mothers doubt ourselves so much. (I often feel not only like I’m doing the wrong thing but am actually the worst mother in the world.) I wish you and your families the smoothest, gentlest possible transition into the new school year.

  2. Worst mother goes to the mom of an eating disordered girl, right? All mom’s fault? Controlling and obsessed with her own body image and all? No thank you. I came from a family of eating disorders (binge eating), and I REFUSED to say one single word in front of my daughter about my own insecurities. Not. one. No words of diet, Of ‘eat healthy’, etc. None of it. And yet, when my daughter was in the 7th grade, she lost almost 30 lbs, and came close to dying. Anorexia is a horrid mental illness, kills 20% of those who suffer from it. 10% from starving/heart attacks/etc, 10% from suicide, because that voice in your head telling you how much you suck for being weak and eating gets to you. Not comparing, because I don’t think there’s such thing as a GOOD mental illness. Those days (weeks….months…)with her pinched face and savage voice, crying and begging me to not make her eat and gain weight she desperately needed, those were the worst days of my life. So yeah, I get it. As she slowly gained weight, got back to healthy, my old happy girl returned. Her brain was no longer in starvation mode, and allowed her to think clearly, to laugh, to function properly.

    One difference between what I was going through and what you’re going through is I knew 100% that food was the answer. There was no doubt in my resolve. My husband and I knew she had to eat, or she would die. With anti-depressants and anti-anxiety meds, it’s more nebulous, right? Some people, it’s the lifeline that tethers them and helps them to remain moored to this world. Others, it can confuse them and make things worse. I do think that she’s young enough, and verbal enough, that you will see signs if something bad seems to be coming. You’re an amazing mom, and you can handle this. You have done nothing wrong.

    All of this is to tell you that you’re not alone. I don’t have the same experience that you and Jesse are going through. But I’m here, and I get it.

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