OCD Awareness Week

October 10-16th is OCD Awareness Week, so let’s talk about that.

I started showing symptoms during puberty, around 11 years old.  I wasn’t diagnosed until I was 19, however, as child psychology was still a bit taboo in the 90s.  It started with Trichotillomania.

For those unaware, Trich is a compulsive hair-pulling syndrome.  I started pulling my hair out in 6th grade.  At first, I didn’t realize I was doing it because I would fall into a sort of a trance, only to come out of it and discover hair everywhere.  My doctor diagnosed me with alopecia, because she and many other medical professionals I encountered over the years had no idea what Trichotillomania even was. 

When I realized I was the one doing it, I researched the crap out of it, as I tend to do when something makes me nervous or scared.  Once I realized what I was dealing with, it took 8 more years and three psychologists before I found one who knew what I was talking about.  I had another flareup when I was 19, so I marched my bandana-covered head into my doctor and said “Listen…this is what I have.”  She agreed.  She knew what I was talking about.  It was instant relief.

And then she diagnosed me with obsessive compulsive disorder. 

Trich is a definite red flag and true cousin to OCD, so there was little surprise.  They asked me questions, such as do you ever have intrusive thoughts that you can’t control?  Um…yes, doesn’t everybody?

Apparently not.

I was never the neat-freak, handwashing kind of OCD, but my compulsions lie in Trich and my obsessions rest in my brain.  It’s a truthful diagnosis, and also my best controlled one.  I deal with my anxiety and depression all day every day, but my OCD is pretty well regulated.  The only thing that still bothers me is the incessant counting…i used to count everything, but these days it’s mostly just my steps.  Mark got me a Fitbit so that I can remind myself there’s no need to count because my watch is doing the work.  It’s helpful…sometimes.  Not all the time.

I don’t think much about my OCD because it is so well-controlled now.  I do however take great offense when folks who have “quirks” claim they have OCD.  Oh, you can’t go to sleep at night with dishes in the sink, so you don’t have to do them in the morning?  How quaint.  Sounds a lot more like a personal preference than something you have to do in order to keep you and your family alive, which is how an OCD brain can think.  OCD is not quirks; it’s patterns of behavior that disrupt your life.

Alas, my life is not disrupted by it at the moment, which makes me happy.  I do worry daily about another Trich relapse, though, and I am extremely particular about my hair since I lost so much of it in the past, and it is much thinner than it once was.  However, I know now that should that happen, I can immediately call my doc and we can figure out a game plan.  That wasn’t a luxury I felt I had in my early 20s.  And even when I count my steps, I remind myself that my Fitbit is on the job, and try to use coping mechanisms to draw my attention away from the counting.  I do the same with the intrusive thoughts.  Truthfully, I am making progress daily.  I hope others our there can say the same some day.

Here are a couple of links to resources about OCD:

International OCD Foundation

Symptoms of OCD

Help for OCD

Trichotillomania Learning Foundation

Dancing in the Dark

Last night, as I was dancing with depression, she said that I had no blog topic for today and that I should just take the day off and stay in bed.  She said a lot of things yesterday, and they all sounded pretty good.  By the end, I found myself huddled under a blanket doing worst-case-scenarios and having a literal screaming match in my head between Sane Brain and Crazy Brain.  After about an hour or so, I took my sleeping pills.  Sane Brain was getting quieter, and tired.  Crazy Brain was raring to go, and needed medical intervention.

When I woke up, I felt a lot better.  I sat down to write, and briefly considered ignoring last night’s darkness, until I realized that it is Mental Health Month.  Two years ago, I wrote a series of blogs about breaking the stigma of mental health, using one of my diagnoses as a jumping off point each week.  I received some lovely feedback from family and friends.  I hope I broke a couple of stigmas for someone.  One can dream.

Anyway, it’s two years later and I write about my mental health all the time, and not just in my blog anymore.  I have had three articles published at Mental Health Crisis Angels, which is a peer support group, mental health blog, and all-around stigma bashing organization.  The first was about my struggles with Severe Anxiety Disorder.  The second, about tips to deal with anxieties, big and small.  And the last was about Trichotillomania, which I developed when I was eleven. 

And then there is my chapbook.  The whole thing is about chronic illness and, by default, depression.  Now, I have had symptoms of depression since I was around 8 years old, but it didn’t go full-blown until I was sixteen and diagnosed with diabetes, which is where my chapbook begins.  Some of the poems in it are new.  Some I wrote 15-20 years ago.  All of them are about battling the depression caused by illness and trauma. 

Then my blog, where I write about mental health on a personal basis.  When I was first diagnosed, I was scared to share my experiences because of what other people would think of me.  I’ve had people call me a liar.  I’ve had people tell me I’m making up symptoms.  I’ve lost friends because I’m “too complicated.”  I’ve had to regain the trust of people I love.  I’ve worried about employers not wanting to hire me.  It seemed for a while that telling people about my illness made me lose them, so why share?

But then one day, about fifteen years ago, I posted something about Trichotillomania.  Just a logo or something from the TLC Learning Center, which was the only resource for TTM at the time.  A friend emailed me: she saw the logo, and decided to take the leap and tell me that she, too, had Trich.  I had known her for years, and had no clue.  She asked me not to tell anyone, as we had many mutual friends, and she was embarrassed.  I understood.  I, too, had been so ashamed of it, once.  However, it was that day that I realized we should not be ashamed-how much easier would my life have been, had I been able to confide in her?  How much less lonely would she have felt, knowing there was not only another person who was going though this, but someone who was already a friend?  Youth could have been a little different for us.  A little less lonely, at least.

Anyway, from that point on, I started sharing my experiences, opinions be damned.  I didn’t want to feel how I felt anymore.  I didn’t want to feel how my friend felt.  I wanted to stand up: for her, for myself, for everyone that was too scared. 

The stigma of mental health is, thankfully, changing rapidly.  Especially in our current climate, when people are getting whacked in the face with anxiety and depression on levels they have never known.  I still find solace in my professional-cynic status; I was anxious and depressed way before this whole shebang.  I will be when it’s over.  Right now, I’m kind of doing well because as I’ve said before, to me, the world has always been on fire.

So happy Mental Health Month to all of you.  It isn’t just those of us who live with mental illness that need to be celebrated and lifted up right now.  It’s all of us, because we are having a worldwide mental health crisis, whether we acknowledge it or not.   

Please please please, stay safe, stay sane, stay healthy.

World Mental Health Day

I’ve got a few prepared blogs ready to go, and I should definitely be using one today as I spent yesterday at Mercy hospital puking my guts out.  However, I also had a special topic to post about today, as it is World Mental Health Day, and while my physical health is kicking my butt I will try to expound on the other side of wellness.

I started my journey with mental illness at a young age, but wasn’t diagnosed with anything until I was nineteen.  Then they decided that I was Bipolar and loaded me up with medications.  Never mind that I was NOT Bipolar, and did NOT need those meds.  I became a zombie.  Everything somehow got worse instead of better, and I lost whole chunks of time from being so heavily medicated.  Eventually, my mother got me to a clinic where a doctor told me I did not have Bipolar Disorder, and gave me one pill.  One little miracle pill that lasted me very well for a very long time, until my insurance pulled it out from under me.  I went on its sister drug, Celexa, and yes, I do have a couple of backup singers now, but it is nowhere near the fourteen pill a day diet I used to be on.

My diagnoses have changed many times as well.  Now I am diagnosed with Major Depressive Disorder, Obsessive Compulsive Disorder, Severe Anxiety, Trichotillomania, and Post Traumatic Stress Disorder.  These feel the most accurate, I must say, and are much better than calling it all Bipolar and moving along.  It took the time and energy of many medical professionals to figure out what was really going on with me, and I am forever grateful to them.

I tell you these things in the same way I talk about diabetes or gastroparesis, because to me they are no different.  Yes, my pancreas is sick and therefore I have diabetes.  Well, my brain is also sick and therefore I have depression.  I do not believe in the stigma of mental health, so I treat its discussion no differently than that of my physical health.  Sometimes this really surprises people.  There have been many moments when I have received messages from both friends and strangers telling me that they are proud of what I have done, just talking about mental health.  I don’t know that it’s something to feel proud about, because it’s just a piece of myself that I express to the world, just like the other pieces.  I’ve had people write me with “me too.”  This is when they realize that they have the same condition, but couldn’t put a name to it.  Or when they’ve been diagnosed as well, but afraid to tell anyone.  These little messages make me feel special, because my words on mental health are breaking a stigma for them.

It’s the stigma that is the worst bit, in my opinion.  It’s the fear that we have, that someone else might think we’re wrong in some way.  We’re scared of the reactions of other people, and that forces mental illness into hiding.  It shouldn’t be hiding.  It should be worn loud and proud.  If you have a mental illness, you battle with that monster daily, and no one sees it.  You fight wars against your demons constantly, even when you’re wearing a smile on your face.  You know pain in a sense where physical pain would almost be a relief.  And still, we hide this debilitating bastard behind so many veils of self-doubt that we become another person, almost.  There’s the person you present to the world, and the person you are on the inside.  I say no.  I refuse to be two people, living half my life in shadow.  I would rather throw it in your face and if you don’t like it, the problem lies with your own fears and neuroses.  Mental illness is not contagious.  In my experience, it really only scares those that already have it, and are doing nothing to help themselves.  So, shout it out!  Scare those people into getting help.  Scare the people who think mental illness isn’t real-be their proof!  Stop letting stigma hold you back.  Other people do not dictate the course of your healing, you do.  Talk about it.  Laugh about it.  Just don’t let others tell you your experience.  As my father would say, “Fuck ’em if they can’t take a joke.”

So, on World Mental Health Day, I will be taking care of my physical health, by lying on the sofa and watching Parks and Rec and drinking a smoothie.  It’s not what I had planned, but it’s what needs to be done, so that my mental health can realign as well.  The two are very connected for me.  When I’m in the hospital I become instantly depressed, and it takes time for that feeling to fade away.  So today, I will do all I can to make myself feel better, inside and out.  I will also, as always, continue my fight against the stigma of mental illness and tell you, my reader, that if you ever need an ally in this battle, you have one right here.

Stay safe, stay sane, and have a good Thursday.

Status Report

Apparently, they fixed my stomach, which everyone is hopeful about, except me.  I have almost no hope this will work, as I have had no hope for quite some time regarding different treatments.  I try to muster something optimistic and I suppose that miracles are possible but I feel that it would take as much for me to feel confident that everything was going to work out.  It is quite rare that things do.

I went to my first appointment at my new therapist today, which was less stressful than my panicked brain made it out to be last night.  I scored high for depression, anxiety, and trauma, the three subjects whose tests I always pass.  My counselor is an intern, which alarmed me at first as I am used to the hardened professional.  She seemed nice enough, and she knew what Trichotillomania was, which is my psych industry litmus test.  I figured that if she wanted to take me on as a patient in her last year of school, that I would oblige.  These days I am only finding therapy necessary for a quick checkup of sorts.  It’s more about the daily stressors and handling my anxiety and depression than it is about past traumas, Trich, and OCD triggers.

Mark has considered starting therapy, as he is sure he has PTSD.  I have more or less armchair diagnosed him after reading a crazy number of articles on healing trauma.  He is the sort that puts off going to the doctor though, and his first foray into it was not great.  He attended the initial intake session, and then felt overwhelmed.  It can be overwhelming.

First, you have intake.  This can be 2-3 appointments where you meet your counselor and they take down a bunch of information.  They’re a question and answer sessions more than anything else.  Today she asked me about my family, friends, living situation, working situation, meds, illnesses, and whether I use caffeine.  They give you little tests to take that tell what your mental state is within a period of time.  You fill out some forms.  For my husband, each appt will cost 40$.

This is why he doesn’t go, you know.  And that’s a whole other blog post.

After intake you meet with a doctor, which takes about an hour.  My appointment for this is tomorrow, as I was super lucky to avoid another month at the MAPP clinic.  After that, appointments with the doctor (or more accurately, prescriber,) only take about 15 minutes tops.  You set up appointments with your counselor.  They meet with you for about 45 minutes as often as you feel necessary.  Currently I go every three to four weeks.  And that’s it.  You just keep going, you take your meds, you tell the prescriber and counselor how you feel, and you get better.

I mean, you shouldn’t have to pay 40$ a pop for it.  But again…another time.

I only write this because you never know who might be considering getting help.  You might be a kid who is scared of how he feels.  Or a mom whose stress level is through the roof.  You could be anyone facing any number of problems, and you could be scared to make the phone call because you don’t know what comes next.  That’s how I felt when I first started therapy, and it’s what my husband still feels today.  But you should make the call, if you’re thinking about it.  It might be hard to open yourself up a little, but I guarantee it’s not as hard as the struggle you’re already living.

Breaking the Stigma

Did you know that May is Mental Health Awareness month?

Well, now you do.

I was 19 the first time I saw a counselor.  I was going through some stuff and having a really hard time, and my two friends dragged me to our colleges mental health department and made me talk to someone.  That was the beginning of a long and amazing journey to wellness for me (not that I consider myself well; I consider myself well-managed.) At first, I was ashamed.  I think we all feel that way a little when we admit there’s something wrong in our minds. We think we are less than, that we have something unfixable in us that others will judge and misunderstand.  I despise this idea.

Eventually, I started to think of my mental health in the same way I think about my physical health.  I have diabetes, which I manage, and when people hear that they don’t think of me as a lesser person. Ergo, I do not expect people to respond that way about my mental health.  If they do, they are telling me two things about themselves: they are uninformed, and they are scared. So many of our bad reactions are done out of fear, and that is probably the biggest problem that people with mental health issues face.  I might cry at weird times, and I might have days where it’s hard to get myself out of bed, but I’m not going to go crazy and murder you with an ax. That’s not how this works.

The only way I can think of to combat this fear is with information, and since May is mental Health Awareness Month, I am going to use it as an opportunity to talk about mental health, mine specifically.  I want to be that person you know who has that thing you heard of, and who explained it to you.

Today I’d like to talk about Trichotillomania.

My friend Sahar always called it “trickatillawhatnow,” but most people refer to it as Trich, or TTM.  Trich is a compulsive hair pulling disorder. I mention this first for two reasons. One, it’s an often misunderstood disorder, and two, it’s still considered to be a mostly unknown disorder.  When I was 20 I saw a doctor that flat out did not believe it was a thing. When I was 12 and was first afflicted by it, my doctor thought I was suffering from alopecia. Of course, I didn’t come out and tell her I was doing it.  I still didn’t know at the time.

See, it starts young.  I was in maybe second grade when I started pulling out eyebrows during Math class.   At the end of class I would have a neat little pile of hairs on my desk and wonder how they got there.  In fourth grade, it was eyelashes. In sixth grade, it was hair from my head. Each time I would observe the growing pile of hair, unsure how it came to be.

My mom took me to the aforementioned doctor, and I was instructed not to pull my hair back as my penchant for ponytails must be the root cause of the problem.  Of course it was not. I remember one day in sixth grade when I pulled my hair back and my teacher yelled at me, telling the whole class that I wasn’t supposed to wear ponytails because my hair was falling out.  

Adolescence was garbage.  But I digress…

My Fortress of Solitude as a child was the local library, so I spent some time researching what was up with me.  Then in high school, when internet access became a thing, I found the Trichotillomania Learning Center, which helped me understand what was happening.  Which also led me into the office of the doctor who knew nothing, and then off to greener pastures with a clinic that knew EXACTLY what I was talking about.  

New doc put me on one pill (I had been on 14 at that time) and symptoms stopped almost immediately.  I am still very self-conscious about my hair, and I still pluck my eyebrows almost daily, but otherwise I leave it be, and am thrilled to never find tiny piles of hair lying around.  

In my life I have encountered many people who have had Trich.  I have had friends confide in me, I have had others who didn’t know what it was be so grateful to put a name to the weird thing they were doing. In fact, this is the rarest of my disorders, but it is the one I have identified the most with other people.  

I refuse to give into the fear of misinformation.  If you read this and you have questions about Trich, feel free to ask them.  I am an open book on my mental health, and I do that to help inform others, All I really want is to take away that fear.  Fear is what motivates us to hate, and judge what we do not understand. So if I can do my part to remove that fear, I’m doing what is needed, in my mind.  I hope that this, and future blogs on mental health, open someones eyes to the fact that we are no worse, just a little different. At least, that’s what I believe.

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