Tag Archives: stigma

Bucking Conventional Wisdom in Mental Health

February 4th, 2015

strollercliffMy two hot buttons are pushed every time the topics of psychoactive drugs and forced treatment are brought up. The two are interrelated. First, there is an over-reliance and near worship of psychoactive drugs in our culture. The other is the problem of power and coercion, forced treatment intended to be helpful but ultimately damaging.

I am a single mom of two boys, both adopted as infants. They are now young men ages 26 and 20. My 26 year old, whom I’ll call Joe, has big gifts and big challenges. I’ve worked in and around mental health for over 40 years. Not as a clinician, but often in situations that created relationships with people with the life experience of mental health diagnoses and extreme states. As my son’s challenges began to come to light in kindergarten and first grade, I tried to call on that life experience and my optimism for his future. I confess I also tried to “fix” him although I would never have called it that. I thought surely if we get a handle on whatever is going on now, we’ll know what to do!

I came into this journey believing medication was a last resort, and I got a lot of lip service in that regard. However, I couldn’t hold on faced with the countless professionals in all manner of fields who believed medication would necessarily be part of any plan for him. We started medication in fourth grade, took a holiday in 6th, by the end of 7th he was back on them and remained so until he was about 23. I kept a running tally of medications tried for a long time. Not sure I got them all – but I have 27 on the list, often in cocktails of 3, 4 or even 5. He has had 13 years, literally half his life, under the influence of medications. He’s now been off all medication for 3 years.

I decided to write this after another blog about the Murphy bill. It opened with a brief story about a 19 year old stopping his medications wanting to know what he is like without them. I wanted to tell the 19 year old that he can find out what he is like off medication, just don’t go cold turkey. Seeing bad results in 12 days doesn’t mean you need medications for life! If you’ve been on as long as my son was, take a year or even more to come off.

My son’s last drug was clozaril . We both say the best thing about clozaril was it got him off everything else. As the psychiatrist was attempting to bring the dose up, my son began saying no, he wanted to come down. Eventually he just stopped. He calls it cold turkey because there was that final day of “I’m done!” but in truth it was a long, slow taper.

Life hasn’t been without bumps since then. But we have a much better class of problems and he’s experiencing a better range of feeling and functioning than he ever did on the medication – any of them. He has some very dark times that come on him suddenly, but he’s learning to manage those better and better. Connecting with others on the journey, learning about hearing voices (www.hearingvoicesusa.org) and alternative views about his experiences have been powerful and healing. Most important, these so called alternatives have revived hope.

I want to move to another subject and that’s the power dynamics in mental health, and in parenting into adulthood. I don’t feel 18 should be such a cliff. It’s not a surprise. We all know that it’s coming. Joe was the kind of kid who played power trips all along and so I had to adjust and find ways to avoid that. One way for 18 not to be a cliff is to release and become more of an observer and supporter earlier. For me the dance goes on — suggesting, supporting, cajoling and whatever other approaches occur to me along the way. I’ve found the most powerful thing I can do is just be present. We go for car rides in bleak and dangerous times. I might sit quietly in the room with him as he talks things out. It doesn’t have to make sense to me. But curiously, eventually, it does make sense.

Once when I was in an appointment –at Joes’ request– to hear an update on medication, the psychiatrist started talking to him very gently about how critical it was for him to stick with the (medication) program. She told him if he didn’t, he’d lose judgment…he might not even recognize that he was sick. Although this was a stage when I didn’t typically speak, I did speak up. “That hasn’t been my experience. Joe does know when he is struggling more and he reaches out for connection. Sometimes not in the greatest way, but he does know.”

I’ve thought about that brief conversation countless times, and it becomes more important each time I hear it in my head. I think it’s a terrible message to tell someone that they don’t know themselves, can’t know themselves – and believe me, I know when it looks like that! People can make sense of their experience and can be supported through extreme states without force. In fact, I believe force is tremendously damaging and I won’t play that card. No AOT or Roger’s Orders for us. There’s much more I’d like to say, but I’ll save that for another day.

Our guest blogger Marylou Sullivan is the parent of a young adult with mental health challenges. She is the Executive Director of the Western Massachusetts Training Consortium. Ms. Sullivan is a passionate advocate for people with disabilities.

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My Anger, No Longer My Danger

December 22nd, 2014

angrysadgirl4I have been angry for a long time, and I have let that anger overpower me without actually thinking about it. All I knew was that as awful as I felt, it still felt good to have something other than myself be in control, and I held on to it like a lifesaver while I tried to keep from drowning in the sea of heartache, loss and betrayal that became my life. Although I looked to the anger to save me, and even grew to kind of love it in a weird way, it didn’t come without a price.

With that anger came long and severe bouts of depression. Some days I was so desperate to stay home that I deluded myself into believing that I was physically ill, giving me the perfect excuse to cancel whatever plans I had for the day, or the entire week. I cried often, too; at home, in the car, in the grocery store, in my sleep. Everywhere. I knew I was angry and I knew I was in pain, but I didn’t know what I needed to do in order to make it stop, nor was I sure I wanted it to stop. I was comfortable in my misery. Of course, people were concerned and I got the attention I wanted and needed by outwardly expressing my anger. Other times, I was less dramatic, even secretive, and relied on my self-mutilation to communicate to those around me that I was in pain.

Very recently, a family friend took their life, and it was devastating and a real shock. I know what you’re thinking- this was my turn around. This was that life changing moment that made me realize that I didn’t want to be angry and depressed anymore, but that couldn’t be further from the truth. Their death, their choice to take their own life made me think that if it was so easy for them to just end it, then why couldn’t it be just as easy for me?

I started obsessing about the idea of suicide. I didn’t exactly have a well thought out plan, but I thought that if I could just do it, get it over with, everything would be better. So I spent hours on the internet researching everything I could about suicide- the history, famous people who’d done it, different methods. To be honest, I was completely frightened by the fact that I was actually considering suicide, but I was also being extremely willful. I felt like this might be the best option. It was either that or live in pain and perpetual confusion about how I was feeling for the rest of my life.

So I started a Pro and Con list to see whether the pros or the cons about suicide would outweigh the other. Some of the cons: I would never see my family again, never see my boyfriend, my rabbits or my friends. I’d miss the trees, the stars, the moon and Harry Potter. And the pros: no more depression, no more crying, no more hurting my loved ones, no more hurting myself, and best of all, I’d get to see my father. And that’s when it hit me. The reason I’d been so angry everyday for what seems like an eternity was because I was holding on to the day my father died, every day after that and all of the events that transpired due to his death. I was angry at him for leaving me, I was angry because it was, and still is, unfair that I’ll never be able to see him again and I was angry because life was hard without him. So I held on to that anger because it was like holding on to him, and if I let go of that anger, well then I was letting go of him, too. I thought that if I didn’t get upset while thinking about him, if I didn’t cry, then I didn’t care about him, and that somehow made me a horrible daughter.

After a lot of reflection and a lot of talking and exposure, I think I’m starting to see that I can live my life while missing my dad. I still have days that I can’t seem to shake this insurmountable grief that I have, but I’m finding that I am enjoying things that I haven’t been able to in a long time. I’ve ceased my research on suicide and instead replaced it with research on holistic living, something my father also cherished. I wouldn’t say that I’m happy now, that my anger is completely gone, but I’m getting there, and I can’t help but hope that my father would be proud.

Chandra Watts is our guest blogger. She is a young adult who draws on her own life to change how the world sees mental illness. She is one of the founding members of Youth MOVE Massachusetts.

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The attention just encourages her

June 23rd, 2013

d. sharon Pruitt24, flickr, creative commons

“People are afraid of themselves, of their own reality; their feelings most of all. People talk about how great love is, but that’s bull. Love hurts. Feelings are disturbing. People are taught that pain is evil and dangerous. How can they deal with love if they’re afraid to feel? Pain is meant to wake us up. People try to hide their pain. But they’re wrong. Pain is something to carry, like a radio. You feel your strength in the experience of pain. It’s all in how you carry it. That’s what matters. Pain is a feeling. Your feelings are a part of you. Your own reality. If you feel ashamed of them, and hide them, you’re letting society destroy your reality. You should stand up for your right to feel your pain.” ― Jim Morrison

Drama queen. Melodramatic. Overreactive. Attention Seeking. Attention —- (insert your nasty moniker of choice). We’ve all heard them before. Thrown around when a person is annoyed or frustrated with another person’s behavior; I don’t think most people even realize that this too is a form of stigma. You’re invalidating the experiences and opinions of someone. They don’t realize that the message behind those words is so potentially detrimental to another person.

It’s a cultural thing in a way. We’re often taught from an early age to “buck up”. Hold things in, put on your big girl pants and get over it.. Because if I can get up every morning and deal with what life throws at me, why the heck can’t you!?  We’re not taught that anxiety means a lot more than just “hey, this is kind of uncomfortable for me.” Or that depression is so much more than “I’m pretty upset right now.” Or even that the slightest random little thing can become a trigger, which is a bigger deal than just being something you don’t like to be around. These feelings can be all encompassing, to the point often of being crippling, and need to be understood better.

I’m here to say that I am tired.

I am tired of being told that I am not allowed to be depressed because someone somewhere in this world has it worse. I am tired of being told that I am overreacting to something simply because it is a big deal to me, and not to the other person. And most of all, I am tired of being told to stop being so “attention seeking” when I react.

All human beings are social creatures. Some more than others, in a variety of different forms and methods. We operate as a species from such a wide variety of life experiences that it is foolish and ignorant to take someone’s emotions and decide they are invalid. Some seek attention through “negative” means because they have never known any other way. Some are just plain fed up with not getting attention through more socially acceptable methods to the point that even negative attention is better than nothing.  That doesn’t make them a “bad” person. Just a person who copes with things differently than you, and that can with time and effort be guided in the right direction.

Instead of shaming or stigmatizing people,  what we need to practice is support. If a person is making an effort to reach out to you, through whatever means that may be, at least it is an effort. At least this person recognizes they may not be able to get through something all by themselves.  I’m not talking about those whose lives thrive on creating chaos around them, that is entirely different, although still valid. They too are still human. I’m talking about the girl who in a moment of loneliness and desperation makes a suicide threat because she legitimately feels like nobody cares. The person struggling with circumstantial and perhaps other mental hurdles, who is venting because if they don’t get it out somehow they feel like they might explode. The person who is so tired of being constantly bombarded with neverending optimism from others that it’s starting to feel condescending.

Listen folks: sometimes LIFE SUCKS. This is a fact, and that is ok. It is ok to be sad, or angry or any other number of emotions. When we arrived here on this earth what was the first thing we did? We CRIED. Because we were small, helpless and frighted, and needed support. Because we were alive, and part of being alive is to feel.

So the next time someone in your life is having an emotional reaction to something, I want you to do something for me. Don’t offer advice unless they ask,  don’t tell them “Oh I totally understand” if you’ve never been where they are, don’t patronize and say “It’s ok” because in that moment, no it is most certainly not ok.  All I want you to do is listen.

Brittany Bell is our guest blogger.  She is a 24 year old youth advocate at Youth MOVE Massachusetts who is studying to become a youth counselor.  She hopes to bring awareness and support to the learning disability and mental health communities by sharing her experiences.

 

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Heartache By the Number: My life with Dyscalculia

March 19th, 2013

staring-25819-mdys·cal·cu·li·a  (Diss- Kal-cue-lee-ah) n. Impairment of the ability to solve mathematical problems, usually resulting from brain dysfunction.

It can be very hard for me to speak openly about the struggles I have endured because of my learning disability, but in the interest of giving others like me hope, I have decided to really speak out. Ask the average person on the street what dyslexia is and most of them will have at least a general idea and acknowledge it as being a legitimate disorder. Ask that same person about dyscalculia, and they will usually not have a clue what you are talking about. When you try to explain, often they will just wave it off and say “Well a lot of people are bad at math.” But, what I’ve come here to explain is: it is so much more than that.

Since I was very little, I was always ahead of my age in terms of reading and writing. I was the type of kid who was reading Stephen King novels by the time I was ten, and constantly trying to write down my own stories and poetry. But if you asked me to do my multiplication tables on command, I would literally burst into tears after a few minutes. It isn’t that I didn’t want to learn. I actually really enjoy learning new things, and I understand how important mathematics is to living in the real world.  I just plain couldn’t. It doesn’t just stop there either. To this day I can’t read an analog clock, I often have to have my younger brother or another family member help me count up my money, and to date, I have never passed a single math class. I’ve gotten through school by using class substitutions and working around requirements with my IEP plan, but that can only take me so far.  One way or another, the phantom that is math will find me. Bus schedules tend to make me dizzy just looking at them, and I have to have a special application on my phone that does the math for tips at restaurants because I am terrified of not doing the math correctly and offending my server.

It’s hard to live in such a number-based world when numbers cause anxiety at every turn. Out of habit I am always early for appointments because I am in constant fear of being late.  I have to be careful to count my change well when I go to the store so I don’t get ripped off, and people are constantly annoyed with me over how I have to count on my fingers, and how slow I can be at that. But before even those things became the big issue, my self esteem was what took the biggest blow.

I didn’t get an official diagnosis until I was in senior year of high school. I was told by teacher after teacher that I was lazy, I wasn’t paying attention, I wasn’t studying hard enough or sometimes even that I was just plain stupid. The other kids would laugh at me. They didn’t know that I would stay up all night before tests crying over my textbook, or that I would constantly get into fights with my parents because they would get so frustrated when they tried to help me with my homework. I used to hear, “You’re so smart, and this really isn’t that hard. I don’t understand how you can memorize all 151 Pokemon but you can’t tell me what 8×12 is?” And the truth is, neither did I. I had no answer for anyone, I legitimately believed that I was just dumb, and I was doomed to be dumb forever.

I can’t really explain what it’s like to someone that doesn’t have it, but imagine that every single time something having to do with numbers comes up in your life you freeze like a deer in headlights. Your brain goes blank, you sweat, and eventually you cry or scream, or maybe you walk away from the counter in shame even though you really needed to buy that cough medicine, or you really need to pass this exam. It is paralyzing, it is humiliating, and it feels so hopeless sometimes that it can be hard to get out of bed, knowing you have to face the world. Knowing people might laugh when you get an answer wrong in class, or scream at you when they ask you what time it is and you’re not sure because you don’t have a digital watch on you.

On a whim one night, I got so frustrated I googled “Why am I so bad at math” and there was my answer: Dyscalculia. A learning disorder! I took a short test on a website and brought it to the school, begging them to give me a test. They scoffed at first, telling me that clearly this was just some internet thing someone made up, and I was making excuses. My suspicions were right, and I can remember crying from relief when I realized for the first time in my life that I wasn’t some inferior person.  I was just struggling with something that is so little known and so misunderstood that even the special education department wasn’t aware. The irony is that it is just now being more widely discussed, and it is possibly a very common problem which goes unrecognized in so many people  for their whole lives like it had in mine. I sometimes wonder if I’d made this discovery earlier, how much it might have changed my life.

Of course I still struggle. This will be a lifelong issue and I will always be different because of it. However, it is my hope that with advocacy and research, I can do my part to ensure that maybe in the future no kid will have to go through so much pain. Nobody should have to feel inferior because they have a mind that works differently, and I end this blog with a message of hope for those who are aware and struggling, and a call to the world to do your research. We are not lazy, and we are not making excuses. Our disorder is legitimate and painful and we would like to be treated accordingly.

For people who are curious they may have this learning disability, or that their child or student may have it, this web site has a treasure trove of information on the subject.  That site may have saved my life when I was in the lowest point, and I can only hope it will change yours as well.

Brittany Bell is our guest blogger.  She is a 24 year old youth advocate at Youth MOVE Massachusetts who is studying to become a youth counselor.  She hopes to bring awareness and support to the learning disability and mental health communities by sharing her experiences. 

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What I might have been

January 3rd, 2013

It’s a terrible thing to feel alone and misunderstood, to feel like you’re the only one in the world who suffers the way you do. It’s like you’re looking at everyone else from inside an airless glass box, waiting to either break free and join the rest of the normal, happy people out there or fade away and become a lifeless nothing. Growing up with mental illness, I know I felt this way. I’m going to hazard a guess that Adam Lanza did too.

I am not Adam Lanza, but that’s not to say that I couldn’t have been. I was shy, quiet and awkward, maybe even seemingly weird to those who didn’t know me. I also dealt with mounting mental health issues that had some doctors believing I’d need long term psychiatric care.  I wasn’t outwardly violent or explosive, choosing instead to harm only myself, and like every other teenager in existence, I gave my parents a hard time–maybe even a harder time than most parents experience. Why is it then that I turned out the way I did, more stable than I’d ever imagined possible and Adam Lanza is now dead by his own hand after going on a rampage? It all comes down to one thing: support.

I was not an easy teenager to deal with by any means. On top of puberty, I was experiencing auditory and visual hallucinations, severe anxiety, crippling depression and suicidal ideation. I was also a cutter, using that as a coping method to deal with the pain and frustration I had. My parents had to confiscate and hide every sharp object in the house so I couldn’t use them to self-harm.  I was out of control in the sense that my parents felt that they couldn’t protect me from myself, and they lived in fear, not for their own lives, but for mine. They had no choice but to admit me to psychiatric care when I became a danger to myself. It was the only way to keep me safe.

We all felt helpless. I was confused and felt so isolated, like no one could possibly understand the hell I was living in. My parents were just as alone as I felt, but in a different sense. They had essentially lost their daughter, and even more, had no one to talk or relate to. They didn’t want to be judged because their daughter was “crazy” but mostly, they wanted to protect me.

In the 9th grade, I stopped going to school. All the meds I was taking at the time made me gain about 80 lbs. and I felt too insecure about my image to want to go out in public. As my parents tried to force me to go, I became more unsettled and in the end, I threatened to kill myself for the hundredth time. I think that’s when my parents admitted that we all needed more support than just my outpatient therapist. They had already educated themselves on mental health, more specifically my diagnosis and medications, but they decided to look into local resources for parents who had teens with mental illness. As luck would have it, there was such a support group in our town, and my parents began attending regularly.

Through the parent support group, my parents learned about alternative high schools, a smaller school setting with clinicians for students with emotional, behavioral and mental health needs. With a lot of persuasion and maybe even a tad bit of bribery, I decided to give it a shot and to this day, I don’t regret it. Instead of having to deal with 1500-plus students, there were only about 70 of us in the school, and only 10 students per classroom. I received support from teachers and clinicians alike from the day I started there and it made my school days less overwhelming. After a while, I actually looked forward to going.

My parents also learned about a local youth group, supported by the Parent/Professional Advocacy League, for youth like me–and it changed everything. I finally found a place where I fit in, where no one judged me. It was a place where we could all get together and talk openly about our experiences. Everyone in the room got it because they had gone through the same thing. Just as I was making friends and coming out of my shell, my parents were too. They had finally found other parents and caretakers who understood. Things began looking up. My parents were learning new things about caring for a mentally ill youth every day, and I began letting people, myself included, help me. We became stronger together.

The three of us also became advocates together. My parents had learned so much from our experience, and wanted to be able to help other parents who were having a hard time finding information and support for their kids. I was becoming more and more stable and level headed every day, and felt the need to share my story in the hopes that other youth would know that they weren’t alone. The more I shared my story, and the more my parents fought for other parents, the better I felt. I was finally happy, doing great in therapy, and knew that I was going to be okay. I wasn’t wrong. I haven’t been hospitalized since I was 17 and I am now 25.

Those who know me and have heard my story know that I credit my parents for my success. If it weren’t for them bending over backwards to get me the support and treatment I needed, not only would I not be the person I am now, but I most likely wouldn’t have survived those trying years of desolation. However, the credit extends much farther than just my parents. I had, and still have, a vast support system that continues to push and inspire me.

Unfortunately, Adam Lanza and his family weren’t so lucky. It’s been said that Nancy Lanza, Adam’s mother, did not talk about her own or her son’s struggles. Can you blame her? People who have a mental health diagnosis or Asperger’s or autism are seen as lesser beings, often stigmatized for what’s beyond their control, and Nancy was probably afraid of being scrutinized for having a son who needed help. It also seems that she and Adam didn’t have access to the right kind of care, and even if they did have access to it, they definitely didn’t know about it.

What happened at that elementary school last December was a tragedy, and I cannot fathom what the victim’s families must be going through. My heart goes out to them all, but I want it known that my heart also goes out to Adam Lanza as well as his family. He was not a monster, and for anyone to sit there and say that is also calling me monster for having a mental illness. The only difference is that I received all the help in the world whereas he did not, and that is in no way his fault. Am I condoning what he did? Of course not, but this could have been avoided.

I believe whole heartedly that with the combined support from family and peers and effective treatment, youth (or anyone, really) dealing with mental health needs, Asperger’s or other disabilities can overcome their struggles and become a stable, happy human being. It’s time to come forward and talk openly about mental health because clearly it’s affecting more people than you could imagine. It’s only a matter of time before we forget what happened last month only to see it happen again in another small town to another young man or woman who was suffering in silence. It’s time to end the stigma so others will no longer be afraid to admit they need help. It’s time to stop saying we’re going to make a change and actually do something about it.

Chandra Watts is our guest blogger.  She is a young adult who draws on her own life to change how the world sees mental illness.  She is one of the founding members of Youth MOVE Massachusetts.

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