People who equate truth with fact are missing the point.

If the Diagnosis Was Cancer…

If the diagnosis was cancer instead of a mental illness:

No one would tell me I could control my child’s symptoms with harsh discipline.

People wouldn’t say I’m “making” him sick because I somehow, perversely, need that.

There would be enough doctors to meet his needs.*

We would never wait weeks or months for life-saving therapies.

People would not tell me that I’m lucky because my child doesn’t have some other, equally life-threatening illness.

No one would deny that my child’s illness exists.

If my child required emergency hospitalization, he would not be turned away because of a bed shortage.

I would be allowed to give my child food and drinks (if medically safe to do so) while we waited in the ER.

If my child was hospitalized, he would never be locked up, alone because of his symptoms.

While in the hospital, I would be welcome (and even expected) to stay with him all the time, even overnight.

People would not tell me that my failures as a parent were the cause of my child’s illness.

I would be treated with sympathy instead of judgment.

My child would be treated with sympathy instead of judgment.

People would not question my motives for seeking treatment. They would accept that I want to keep my child alive.

I would not have to search carefully for a pharmacist who would dispense life-saving medications without making disgusted faces and doubtful comments about their necessity.

People would accept that, while my child’s medication regimen carries significant risks, the risks of the illness are even worse.

Drug manufacturers would have done research on my child’s medication in pediatric populations so that the doctor and I have the information we need to minimize risks.

If my child was symptomatic during school, he would not be punished for those symptoms or told to stop it right this minute!

If other children made jokes about my son’s symptoms, their parents would tell them to stop.

Other parents would not make jokes about my child’s illness.

No one would insist that television/movies/video games caused my child’s illness.

My child would go to the hospital that has fresh paint, adequate equipment, and up-to-date playrooms.**

No one would say the name of my child’s illness while making air-quotes.

No one would insist that my child needs an exorcism.

People would not scoff at the possibility that my child could die of his illness.

Carter's googly eyes*Not true everywhere, but I don’t know of a single community in the US that isn’t experiencing a shortage a psychiatrists, and especially pediatric psychiatrists. If you know of such a community, please let me know in the comments.

**Again, not true everywhere, I know, but here? The “regular” hospitals are bright and cheery while the psychiatric hospitals have peeling paint on the walls and the staff must become masters of making-do with inadequate everything.

Related Posts Plugin for WordPress, Blogger...
If you enjoyed this post, make sure you subscribe to my RSS feed!
Like it? Share it!
Twitter Facebook Stumbleupon Email

81 comments to If the Diagnosis Was Cancer…

  • Wow. I don’t even know what to say, other then I ache for the injustice of having to fight so many battles just to get treatment for Carter.

    • Thank you. Yes, injustice; there’s no other word for it. The stigma is bad – the judgment and unpleasantness that ordinary people throw at us certainly hurts. But when the institutions and health care systems that are supposed to help us don’t? It’s terrifying.

  • LCW

    I have nothing profound to say, as I’m not an expert. But this makes me sad.

    • Thank you. Yes, sad, but you know what makes me hopeful? Every person who reads my blog is one more person who will share understanding and kindness with families facing mental illness. Someday, you’ll be a breath of fresh air for someone like you already are for me.

  • All I can say is thank you for sharing your stories, and Carter’s stories with us. He is going through something very real. I wish the healthcare of all those who truly need it was better, I wish everywhere had better facilities, non burned out staff, adequate staffing, up to date equipment, and more people who cared.

    Carter’s story is not far from that of someone in my family, and it hurts me when people take their troubles lightly. It is cruel.

    *Hugs* I know it’s not much from across the internet…

    • Sigh. Yes to all of that, especially kind, caring staff who have reasonable work loads so that they aren’t burnt out.

      I feel so blessed to have a growing readership that is kind and open. Yes, angry people come here sometimes (thank goodness for a strong comments policy that makes it easy for me to delete comments that go over the top!), but the love people share with me far, far (FAR!) outweighs any of that.

  • I was diagnosed with cancer 14 years ago. It was hard, but I am fine now. I also have an 11 year old daughter with reactive attachment disorder. It took over five years to figure out what was wrong and get a diagnosis. It took more time to find the right therapist and treatment. Dealing with her RAD has been much, much more difficult in every way imaginable than being diagnosed with cancer. With cancer you get sympathy, as a parent of a RADish…none at all and more than likely there is a lot of judgement.

  • When I saw your link on twitter, I’ll admit, I was shocked, thinking what a statement! After reading I understand exactly why you posted it the way you did. I cannot imagine not having the support if my child was sick, and it seems like support (through good hospitals, good pharmacists, good psychiatrists) is what you don’t have. It may be a sterotype but it seems people hear cancer and feel sadness, people hear mental illness and think “weirdo.” It takes someone amazing and admirable to be raising Carter, I see that in you in every post you write. I doubt myself when I think “could I do, what she’s doing?” All that rambling to say I can’t imagine what you are going through, I wish there was more research/support for you and you are truly admirable!

    • Haha! Yes, I softened it a bit. Several years ago, someone (a dad whose kids had autism, I think) wrote a book called I Wish My Kids Had Cancer. That went too far, I think. I don’t wish anything except that my son was WELL. But the judgment is salt in the wound and I hate that we have to deal with that.

      Thank you so much, and could you do what I do? I promise, you could. Because when it’s your kid, you just do. There’s nothing special about me.

  • My psychiatrist once told me that my mental illness is no different then a person with heart disease. I treat my illness with pills the same as they do. Your post has solidified the injustice. I’m so sorry this is happening to your son. Unfortunately, I wish I could say that the perception in this world was the same for all illnesses. Your son has a wonderful mother.

    • Thank you so much. Yes, the stigma around mental illness is alive and very healthy. I have hope that someday that will change. Probably not in my lifetime, but someday.

  • I have nothing to say, and I cannot even start to imagine what you are going through. My heart goes out to you and your gorgeous boy.

  • Very true. I have to admit I never thought of all the things outside of the illness you must have to deal with.

  • This post just broke my heart. We all need to work so much harder in this country to make mental illness just as “real” a disease as cancer. I’m glad you’re doing your part by making all of us more informed.

    • Thank you. The more people are aware, the sooner change will come. If even our mental health system and our government don’t acknowledge mental illness as “real” illness, how can we even hope that the person on the street will do so?

  • i’m so, so sorry. my mom was a social worker, though she didn’t deal with kids. she would tell me stories of how her patients were treated both inside and outside the hospital. i really hope that one day, this country can push for reform– or, at least, understanding of mental illness..

    • Thank you. Sometimes, I forget that I even need to write about this. It’s so ordinary to those of us who are living it that we don’t even talk about it all that much amongst ourselves.

  • andrea

    it makes me sad that there are children in this country who need medical attention and cannot get it, or have a hard time receiving it. it blows my mind. why is that so hard? a child is sick and needs help. it seems so simple.

  • I don’t know why but the point about what children’s wards vs. psych wards look like really hit me. I follow someone on twitter who has been posting from an (adult) psychiatric facility and he remarked recently on how ugly it was. I don’t get how making someone feel like they’re in prison is supposed to help them.

    • The cynic in me wants to say that the purpose is to prepare them for the prison cells that will ultimately be their homes because, all too often, that’s where this journey leads.

      I get the safety issues, but there’s no way that a soft, pretty blue on the walls is less safe than dingy yellow or filthy white.

  • adrienne – you and carter and the rest of the family are constantly in my prayers…i wish i could do more.

  • Wow, I am so sorry with all that you have to deal with. I wanted to work in the mental health field and as someone who has been doing there research it sucks about the way the whole field is treated especially the patients.

    • Thank you. The best first-hand account I’ve ever read was by Elyn Saks; her book is called The Center Cannot Hold. I can’t recommend it highly enough. The most interesting thing to me is the contrast between British and American psychiatric care. Striking.

  • Saucy

    This post is AMAZING. I cry & ache for you, Carter & your entire family. Yet I am amazed at your ability to continue making it through every day while still teaching so many people about MI. There is still so much to say but I am simply at a loss for words right now. Thank you thank you thank you for sharing this.

    • Thank you so, so much. I can’t even properly express the gratitude I feel when people tell me that I’ve taught them something new because I know that, if and when you meet a family like mine? You’re going to share kindness and acceptance with them. That fills me with joy.

  • Thank you for sharing this. I only know one little, tiny bit of this hurt…..but even that tiny bit was awful and unfair. I applaud you for being brave enough to talk about it all.

    • Sigh. Yes, even a little taste of this is more than enough. No one, whether the MI in question is like a cold or pneumonia or ebola, deserves to be treated unfairly.

  • d

    the only way things get better is when people fight for them. Unfortunately, fighting for something means that it becomes a battle and a war. It was because of the fighting my parents did with me, I with them and all the doctors, that they were able to get my sisters the help they needed as time went by. They say I had to suffer so the rest of them could get help…Im ok with that, as long as help was what they got. Keep fighting!!! Carter isn’t the first and he isn’t the last…but the rest that follow will be eternally greatful for what you had to go through!! Thanks for opening up doors, for encouraging and paving the way! You Rock!

    • Thank you, my sweet. Yes, my hope is always that, with more awareness, things will begin to change. It will be slow. Carter may or may not benefit directly, but he and I WILL be a part of what comes next. The ball is rolling; lots of advocates for people with mental illness are pushing hard. I hope I’m doing my part to help it gather just a little more speed.

      It’s how slavery was abolished. It’s how women got the vote. It’s how the civil rights movement was begun.

  • The stark contrast between how someone with a disease like cancer and how someone with a mental disorder is treated is shocking, maddening, and extremely sad.

    What a profound post. Thank you for this post. I think everyone should read it.

  • Michelle

    I have thought many of these same things before. Although I don’t have a child with a mental illness, I am going into the field of therapy and I see on a daily basis that the stigmatizes that should have disappeared decades ago are still alive and well. With many illnesses you get support and sympathy, and so many suffering with a mental illness just get criticism and are left feeling shameful on top of everything else. I hope to be part of the movement that changes this, and I thank you for doing your part!

    • Thank you. Yes, it’s so true – the illness is plenty bad enough, but to compound it with shame? Such a terrible thing to do to people who are struggling, and who want the same thing as anyone with an illness wants: help to live the best life possible.

  • I worked as a special ed teacher for kids with mental illness, and I agree with so much of that. I took over for a teacher who gave children ZEROES for behavior that was a part of their disorder AND/OR a side effect of their medication. Her job was to build them up, not break them down, which was the effect of what she did. Good for you for talking about this!

    I often say personally that if Lyme was like Cancer people would understand the nature of my own disability and illness. It’s great that cancer has that awareness. I just wish other diseases and disorders did too!

    • Yes. Anything that’s invisible, people want to not believe. It’s so medieval.

      That teacher was clearly in the wrong profession, which breaks my heart for those children.

  • It pisses me off that parents have to go through such crap when their kids are sick. A friend of mine has two young kids with various mental ailments and mitochondrial issues. So many people have judged her OPENLY, TO HER FACE because her kids issues are so rare the medical community does not have a name for them yet. Seriously, when they narrow down the disorder, she gets to name it, that’s how rare. But because of the nature of the symptoms, people think she’s making them up. She hoops she has jumped through with specialists, and insurance companies are unreal. It really makes me furious.

    • Oh, that’s terrible. I hate that there are so many stories like this. I wish so much that our story of beating down doors to get the help we need was an exception. Instead, we are very much the rule. That’s a crime in my book.

  • Anonymous

    Exactly. Exactly. Exactly!

    Thank you for posting this. It is all so true, and the stigma is indeed the salt on the wound (or how about toxic acid? Yes, that’s accurate). While cancer is a terrible disease, and I almost lost my friend to it – instead, he lost a leg – I remember how he was treated, and it stung. A lot.

    Fundraisers for his medical bills and for Cancer organizations in his name. Teachers understood that it would take awhile for him to catch up because he was sick and in the hospital. Free Yankee tickets up in those special rooms towards the top. Schools getting the whole class to write notes to him. His Mom at his bed when he was scared. More than one phone call a day to only select people while in the hospital. Nobody yelling at you to “use your coping skills!” whenever you get upset when you just want to cry it out (NOTE: it was only some of the staff at the pych hospital that did this; but still). Nurses who don’t ignore you when you have an asthma attack, saying they’re busy and you have to wait, while you can barely breath, are crying, and without your inhaler (true story). Nurses who let you wait at discharge to say good bye to your friend, instead of screaming at you to get out because you were “bad” that day (again, true story.). An outpouring sense of love and support, and so on and so forth.


    I’ve grown up with teachers thinking I am spoiled, bratty, attention-seeking, lazy, and that I should “just try harder”. Teachers that said these things in front of other kids, one teacher even screaming “If you won’t (how about can’t right now?) do the work, why even come?” Other kids think I’m weird, a freak, spoiled, and dangerous. One even asked me if I was going to kill me. My family (besides my mom) think I’m selfish, over reactive, lazy, and don’t try hard enough. My employer (a friend’s Mom – they’re carnies, it’s a fun job to have at 14) insists that I have Lime Disease, that these didn’t exist until Lime Disease became more frequent. That even if I was treated when I was two, it could still be active and I should get IV treatments. That even though I have tested negative, that I could still have it but not strong enough to be a concern (which is all true; but really?). Being put in a hospital where I wasn’t allowed to call my friends and only certain family at certain times, at one visit with only one phone call per day. One day, I had to sit and hold a friend in the midst of an asthma attack, as she cried and could barely speak, saying how scared she was because the nurses were on break and didn’t have to come back to give her her inhaler. Where I watched that same friend cry, “I didn’t their help! They weren’t there when I first needed them” because her trust broken. Hugging that same friend goodbye as I was forced up to group while she stayed in the nurses office, and having to walk away as she clung to me as a young child would to her mother (like I used to cling to mine) – scared and alone with people who didn’t want to stop relaxing for her. Where my level was lowered because I spent a lot of time with one girl (we did *everything* together), just as best friends trying to get through all this would, because it demonstrated “boundary issues”.

    • (Sorry, I accidentally hit submit too early).

      Where I had friends stay in the unit with me on my last day, losing their privileges, and then being yelled at when I wanted to say goodbye to those friends who gave up their lunch for broth (no joke – that was all they gave you if you stayed). Where, when I returned and struggled to make up work, I was yelled at because it was taking me awhile. Where, when I was brought to the Principal’s for writing on a desk (which I admit to fault to) I was told I was going to be put in In School Restriction (where most kids get a lecture or lunch detention). Or when I had a panic attack and meltdown because of that, guidance told me that I was being insubordinate, and that “other kids” had done this many times, only causing me to freak out more. Sending me home because of said meltdown, which could have been fixed had they actually listened.

      I could go on, as there are so many more. At fourteen, this illness has taken so much for me for so many years. The stigma has prevented me from getting some of them back when things are better, such as friends (which I talk about here, if you’re interested: I don’t pity, I just want somebody out there to understand that what we go through isn’t some trivial trap made me pharmaceutical companies, or that Eli Lily made Zyprexa (the first of the atypicals, which led to the others) so they could cause diabetes type II and make money for their diabetic medicine, also (yes, I’ve heard that before). Where people will do all those generous things they give to Cancer patients, holding us and our families as we cry, instead of judging and criticizing. If anything, all I ask is that they at least take the time to try. Is it really that hard to make the attempt and put forth the effort? I really do hope not, because things do need to change.

      I would like to also take this comment to thank my eighth grade Social Studies teacher, Mr. Chappas, who did all of those things. Who, when I began to panic and cut in the back of his classroom, took me outside (yelling at me for some false reason so nobody would suspect anything but a lecture), asking if I understood hy I did it, including the endorphin factor, and shared that he had a good friend (ex-girlfriend) who used to cut. He understood why. Through the rest of the year, he became my guardian, checking in on me, and making sure I was OK. I loved him so much as a teacher, and as a substitute father figure, and am forever thankful.

      We need more like him.

      With Love,

      • No, no pity, but love. So much love for you already.

        I am shaking with anger (fury, rage) for what you’ve been through. I’m also not surprised, even a little. It matches all too well with what I’ve seen and heard from many kids and parents. The fact that I’m not surprised makes me even angrier. This should be shocking, and instead it’s ordinary.

        I’ll be over to your blog to read and comment. Know this: your strength shines through your writing, and your writing? Amazing. If you hadn’t said you were 14, I never would have guessed. Never.

        Have you read The Center Cannot Hold by Elyn R. Saks? If you haven’t, do. She has created an amazing and fulfilling life for herself in spite of a severe mental illness.

        • I can feel that love.

          The anger is magnified that I am not surprised, either, when I experience these things. They are so common that it surprises me when the opposites, such as with Mr. Chappas. It shouldn’t be that way; we shouldn’t have to fight this hard for medical treatment; and we shouldn’t need blogs like this. Recently, my friend, who was at the hospital the same time in a different unit – we got to spent time with each other at night because we were both in “Main house”, a sleeping privilege for those with “good behavior” (sick, right? Never mind the kids that fall apart even at the hospital, who did nothing wrong), and it was amazing having her there – told me worse horror stories. One in particular that came in the hospital with psychosis, yet was talkative, engaging, and mobile. The doctor blasted her system with three high-dose anti-psychotics, with little weaning on time, and physically disabled her. She could barely walk at all, couldn’t talk coherently, was stiff and rigid, and left crying during visitation because she was terrified. That same doctor put another girl on a high-dose sleeping medication to calm her, and she was only awake 1 1/2 – 1 hour a day on. This shouldn’t be happening. We’re neurologically ill; but so many see us as monsters that should just be locked up and or medicated to non function. I feel lucky when I read of others and your son and your’s struggle. It’s sick what goes on; things that would never be allowed in “normal” hospitals. I may not be much more than a dysfunctional, hormonal, awkward adolescent; but I swear I will fight, if with nothing than my words, even if it takes years. Hopefully I can start reaching out now, which I believe I am doing through a woman named Marybeth and I’s website, Ask A Bipolar (, which allows others – parents included – to ask about first had experience and advice from two mentalists (one who also has a Bipolar son).

          Thank you for your words on my writing. Since I was very young, I needed writing like I do oxygen in my veins, and it has truly been my lifeline in times of chaos and rubble. I need it, and I plan to use it as a strongly as I can before I meet Mr. Grim R. Truly, though, it means more than I could ever express.

          I haven’t read nor heard of The Center Cannot Hold; but I will most certainly check it out. Thanks for the recommendation.

          With Love,

          • As a nation, we are trapped in the behaviorism model. We can’t quite make the move over to the medical model. That simple mindset does vast damage.

            You ARE reaching out. You’ve begun, and it will grow.

            Sigh. Yes, all I ever wanted to do was write. It’s the way I learn everything, the way I make sense of the world. I’m glad you already know what works for you.

            Let me know when you’ve read the book. I hope you’re as inspired as I was!

  • Pua

    This hurt my heart and soul. That’s all I can think of saying…it hurts to know there are so many beautiful, wonderful children who are suffering, and their families are suffering, because there such hatred, doubt and FEAR of mental illness.

    • Sigh. Thank you. Yes. It’s the reason I want to scream from the rooftops, There are no disposable people! We spend whatever is necessary to save the lives of premature babies and people with all kinds of terrible diseases. Don’t get me wrong; I don’t want to take one penny from any of those people. I just want Carter and all the kids (and adults) like him to get the same, in terms of both dollars and compassion.

  • 🙁 so sad! Do you have any support groups, with parents with kids with similar diseases? I can imagine that might offer some kind of support… It’s so sad it’s all so hush-hush and taboo, it makes it not-so-profitable for drug companies to do pediatric trials, because there just aren’t enough “official” cases AND they too would be condemned for accepting psychiatric diseases in young kids. Did you see the Oprah episode with the little girl who’s schizophrenic? Also broke my heart…

    • Oh, yes. Our real-life support group has (NO hyperbole here) changed our lives. They are the people I can go to who never doubt or make those strange, judgmental faces, never give me ridiculous, unrealistic advice, and help me navigate the system. The system is inadequate and no amount of knowledge can make it give our kids everything we need, but there are some short-cuts, like knowing which doctors are lousy, which are good, and which are awesome and totally worth making an ass of yourself to get.

      That little girl’s name is Jani Schofield. There’s a link to her father’s blog in my blogroll; it’s called Jani’s Journey.

  • sigh. i read your blog all the time, but rarely comment. I just have no words. I get so upset over the injustices of it all. I just don’t get why mental illnesses are somehow “lesser” than diseases of the body. Why is it so hard to understand that not everyone’s brain operates the same way and that there are those who need help and love and support. Bah. Now I am all kinds of emotional. But that is good. The rest of the world should be getting all kinds of emotional over this too.

    • You know, I don’t get it either. We all know that any organ in the body can become ill, but somehow for the brain it’s controversial. We want to believe we have a great deal more control than we actually do.

  • Hi. I am visiting from the SITS pro blogger challenge. Over at i blog about my memory loss and other things. ultimately i’ve come out of the closet about mental illness and its stigmas. i have a son with OCD and depression and it was a struggle (though not as difficult as yours)to get the right diagnosis. i look forward to reading more from you. I hope someone somewhere can make a difference when it comes to mental illness. great job!

    • Thank you very much! I’ll head on over to your blog and take a peek. I think that changes will come, eventually. It will take time, but the more people know the tragedies that result from this broken system, the more pressure there will be.

  • This is a really great post and hopefully an eye opener for many who read it. I read your blog often and am impressed and inspired by you and your family.

    • Succinct! Love that about you.

      I can’t stop thinking about you, wondering how you are, how you’re holding up. Hoping hoping hoping that you’re OK and getting some help.

  • I just want to give you a hug. I hope that it really opens the eyes to all those that are blind about all of this. Sometimes if they can’t see it or it’s not something that they themselves are scared of then they never ever truly understand.

  • Thanks for stopping by my blog. I think you’re funny too, but not here. This piece reminds me of the book of Job. Here, you show the reason good humor appeals to you.

    People are a bit like the 24-hour news channels. They seem compelled to fill the air, even if it’s with nonsense.

    All the best to you . . .

    Helen ( I keep my funny stuff here . . )

    • Yes, I love to laugh! Sometimes I give in to despair for awhile, but whenever I can I give myself over to the funny. No better way to stay mentally healthy. And thank you! I’ll come enjoy your funny.

  • This one made me cry, Adrienne.

    It bothers me that there is a perceived difference between a mental illness and a medical illness. People, the brain is PART of the body for crying out loud.

    Raising children with mental health issues is a lifetime struggle. These things don’t go away. They might improve, but there is always the possibility of a setback. Med changes are excruciating. And the level of care that is available is hopelessly inadequate.

    Damn, now I’m crying AND mad.

    • Hopelessly inadequate. Yes. Yes yes yes.

      Even if we ONLY take account of the dollars and ignore for a moment the humans caught in this (because really, doesn’t the system operate as if some people are disposable?), saving money on mental health care ultimately costs money. Why? Because if we don’t pay for mental health care, we end up paying for prison cells. We lose the tax dollars because many people that could be employable with good treatment don’t get it. If there was better care for Carter (including appropriate child care before and after school), I would be employed and pay taxes.

      Penny wise and pound foolish. And the suffering is indescribable.

  • Meg

    There are so many people that see mental illness as a weakness and are scared of it, even people within the medical community. This fear has made its way into the mental health treatment practices of America and it shows. It’s sad. We really are not as progressive a nation as we think we are.

    • No, we’re not. Our system is very punitive. Have you read The Center Cannot Hold by Elyn R. Saks? She was hospitalized in the UK and then, later, in the US. The differences are shocking.

  • […] Adrienne over at No Points For Style posted about how different the world would be if Mental Illness was seen in the same light as cancer. Her words and ideas blew me away and I am STILL trying to find the words to tell her how in awe I am. Read it for yourself here […]

  • HB

    Someday, just maybe, there will be science to show that cancer and mental illness might be caused by the very same thing – viruses. At least in some cases.

    There was an interesting article in Discover magazine about it recently. The article was called “The Insanity Virus” and you can read it at:

    There are a few groups of people that it’s still OK to make fun of in America, those being the mentally ill and the obese. I don’t know if finding the science behind it will really help, but I’d like to think so.

    My prayers are with your family as well.


  • I couldn’t have said it better myself! Everything you wrote here is true – and I have felt the same exact way about my son many times!

    Where I live, there isn’t a shortage of pediatric psychiatrists, however, I believe it should be quality over quantity. As for psych. hospitals…I agree! They’re dreadful, dreary places. Usually with a horrible shade of yellowish paint peeling and chipping off the walls. Not exactly the type of environment I envision someone healing in.

  • AmyLynn

    I can relate to EVERY SINGLE THING you listed. I wish the internet was available when my daughter was born and early in her life due to her problems, I, as a mom, felt so. very. alone….Thank you for raising awareness and saying/posting for the world to see what people go through. It hurts all the more when you feel invalidated in so many ways. Things really have come a long way in acceptance, sadly though there is still a long way to go. And as Robert Frost says “Miles to go before I sleep”

  • While I can’t pretend to know what it’s like to have a child with autism, I do understand the frustration with people who don’t take mental illness seriously. I have OCD and I get so tired of people telling me that it’s something that I should just get over, just stop because after all, it’s only in my head.

    There’s so much stigma surrounding mental illness and it’s so sad! I’m sure that’s part of your motivation for blogging about your son. I know it’s a big motivator for me. I want people to realize that mental illness is just as serious as any other illness.

    • Yes, absolutely. And Carter doesn’t have autism; he, too, has a serious mental illness.

      And I want so, so much for mental illness to be viewed for what it is: an illness. Just as hearts and livers and skin can be ill, so can brains. Brains control behavior. Our behavior is not always under our conscious control.

      I have a condition that’s related to OCD. Someday I’ll reveal it here. Someday. I’ve always know that I would tell it, and I think I’m not too far away from being ready. Not quite yet, though.

      Kudos to you for sharing your story. It’s always hard, but it’s always worthwhile. People who are ill in other parts of their bodies don’t have to live in the shadows, and neither do we.

  • Thank you so much for writing about this. Our public behavioral health clinic has ONE (1) psychiatrist for all referrals. She works noon to at least 9 every day and only sees patients in her office. She has to do phone consults when people are admitted. Even if I checked myself in, I’d be sent home after 72 hours unless I tried something drastic. We can’t self-admit for in-patient because their are no beds. The only place for minors right now is a section in the main hospital ward. No formal residential care.

    To see a ped psychiatrist, you have to go to the town over and his waiting list is at least 3 months. I live in a major metropolitan area with 2 huge health systems. There are a few private docs but they only take a handful of insurances. I had to beg and plead to get my daughter (9/ASD) into child psychology services. We are limited to appointments every other week to make room for everyone. She needs to be seen several times a week right now but it won’t happen. We are blessed to have insurance that will pay for whatever she needs less the deductible but there simply are not enough providers.

    That same insurance that pays for provider visits, will NOT put pediatric psych meds on their formulary. The medication her doctor wants her to take. PEDIATRIC prescriptions tested specifically for kids with autism and ADHD. We’re paying at least $85. Health care reform has not gone near behavioral health.

  • Sarah Diggs

    I’m ready to fight the system…my family too is experiencing the worst in mental health, but with our 53 year old bi-polar, paranoid schizophrenia sister. Now sitting in jail facing 20 years and $50K fine for pointing a gun at a gas station attendant while off her medication even though our entire family BEGGED the police, the community health services, everyone to help. We told them she had quit taking her medicine, we told them her violence was increasing (they agreed), we told them she had a gun…we tried hundreds of times to have her “pink sheeted” and not one person would step forward except to tell us to wait until she hurt herself or someone now she’s in the system and will probably not be tried as a mentally ill person, but as a full blown criminal. There has to be a way a family and therapist can demand temporary intervention and continued observation. I’m so mad now I could scream…but at the same time feel like crying all the time. This needs to change NOW!

  • YOU… are amazing… thank you for posting this …. as an adult (and former kid of course) who has a variety of neurological and psychological illnesses… it just helped me a lot today to read this …

    I had to reference you in my post today… thanks for being you

Leave a Reply




You can use these HTML tags

<a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <s> <strike> <strong>