Let’s talk about it – Mental Illness

I have a diagnosed medical condition.  I’ve suffered with it since I was about 9.  It can sometimes be quite severe.  I have vomited in public.  I have been to the ER on more than one occasion.  The discomfort associated is so severe that at its worst moments the thought has flashed across my mind that I may just need to end my life simply to escape the torture, though I have thankfully never come close enough to actually seriously contemplate that.  

This condition has kept me from many things – social events, road trips, certain relationships.  I was forced to take a leave of absence from school.  I even had to leave my own bachelorette party, right in the middle of it!

But maybe the worst part of it is that even though this condition has taken such a severe toll on my life, there are really only a handful of people who know about it.  My parents know, my husband knows, my brother knows, and a few of my very best friends know.  To everyone else, I hide my condition the best I can, and when I can’t, I just try to make up lame excuses. 

I’ve realized that by not talking about it, I’m contributing to the problem.  In this world of awareness about diseases and causes, I’m happy to talk about almost all of the things I believe in and stand for…except when it comes to this.  Nobody wants to wear a ribbon for mental health awareness, apparently including me.

So let’s talk about it.

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I’ve suffered from severe anxiety and panic attacks since I was about 9.  When they first started, I would wake up daily very early in the morning feeling physically ill.  I would spend hours in the bathroom, reading to try to distract myself from the nausea, and usually vomiting a few times.  I would sit and count down the minutes until one of my parents woke up, and things would usually get better after that.  

Of course my parents were concerned, and took me to several doctors.  After they exhausted all the tests and couldn’t find anything physically wrong, they took me to a psychiatrist.  He thought I might have some kind of chemical imbalance, and recommended a medication.  Within weeks, the majority of my symptoms were gone. I was only having my “morning sickness” occasionally, which was a huge relief after suffering nearly every day.

As I got a bit older, some other manifestations crept in.  Certain people or places would trigger me, and once I had a panic attack in a certain situation, just the thought of getting into that situation again would trigger a panic attack.  As irrational and ridiculous as it sounds, I would essentially work myself into an attack by worrying that I was going to have one.  I remember a particular teacher who for whatever reason became a big trigger for me.  He was a nice enough teacher who taught one of my best subjects, but once I associated panic with his presence, there was no stopping it. Finally, one day he walked into the room and I promptly threw up right at his feet.

Once I was in high school, things were pretty well under control.  I had my occasional moments, but I didn’t consider it a huge part of my life, aside from taking a pill every day.  The summer before I left for college, I had a final check-in with my pediatric psychiatrist.  He suggested I might want to try a new weekly pill instead of the daily pill I was taking.  I figured, why the heck not?  A pill once a week sounds better than a pill once a day.  I gave no thought to asking about the pill’s efficacy or comparability to what I was already taking. 

I started college, and things were going pretty great.  I was making friends, getting very involved in the band, and classes were going fine.  And then one Saturday night in October I was out with the sax section, having a nice dinner in the North End of Boston.  All of a sudden, a monster panic attack hit me like a ton of bricks.  I needed to get out of that crowded restaurant, so I made up some pitiful excuse that my mom had called and there was a family emergency so I needed to go back to campus (and what…help from 1200 miles away?).  Of course I didn’t know the city at all, so for 2 terror filled hours I tried to navigate the subway system until I finally made it back to campus.  Some of my roommates were there, so I couldn’t hang out in my room.  I went outside and laid in the grass outside Lamont library all night and just waited to die.

Things got worse from there.  I started waking up again early in the morning, curling up on the floor in one of the stalls of our shared floor bathroom, and just waiting to vomit.  I could barely eat.  I would sit down with a tray of food in the dining hall, eat two bites of something, and then become overwhelmed with panic and need to leave.  I managed to get to most of my classes, although every once in a while panic would strike during a lecture or section and I’d need to escape.  The rest of the semester was just a mess of not sleeping, not eating, and sobbing on the phone to my mother.  She even flew up to be with me a couple of times, because I simply could not even handle everyday activities.  She helped me meet with a psychiatrist on campus, and we started the long, painful process of finding the right medications to help me re-enter the world of functional human beings.

The funny things is, I never told a single soul what I was going through that painful first year of college – not my roommates, not my teachers or TAs, not my band friends.  I’m not entirely sure who noticed my behavior or what they thought about it.  When I was crying, or had to leave suddenly, I’d make up some excuse.  I didn’t share my real pain with anyone, so I had to come up with excuses that I thought people might understand.  I lied, and I exaggerated.  I did and said a lot of things I wish I could take back.  I just needed people to understand my pain and struggle, and telling the truth seemed impossible.

One of the things I feel worst about was a night when I needed a medication refill but absolutely could not leave my room to go get it.  I called one of the few people I knew from home and trusted and told him I was having an emergency and asked him to go pick it up for me.  He did so without a second thought, and when he brought the medication to my room I simply took it from him, thanked him, and retreated back into my hidey hole.  No explanation, no follow up, no nothing.  We didn’t speak for a while after that, and I don’t blame him.  I think I tried to explain it to him months later, but I still wasn’t totally honest, and our friendship was never the same.  I still feel terrible about that.

My freshman proctor actually pulled me aside during the 2^nd semester and asked with a concerned look if I was finding enough to eat in the dining hall.  By this time I was well under 100 lbs, and my ribs and hipbones were sticking out.  I didn’t know what to say, so I just got defensive and proclaimed that I didn’t have an eating disorder and proceeded to eat several cookies in front of him to “prove it”.  Smooth, eh?

The start of the next year wasn’t great.  My anxiety was better under control, but I started with some new symptoms.  I felt overwhelmed and depressed.  I thought I wouldn’t be able to dig myself out of the hole I’d fallen into my first year.  During that troubled first year I’d done some things I wasn’t proud of, and backed myself into some corners I didn’t think I could escape from.  I was convinced that everyone disliked me, for any number of reasons.  My anxiety was somewhat under control and my appetite had normalized. I started gaining weight after the starvation I’d put my body through, and I felt uncomfortable in my own skin.  And I was having a lot of trouble with organic chemistry due to some spatial reasoning deficits.

There were days I couldn’t get out of bed.  There were nights I cried myself to sleep.  I never wanted to be alone.  And yet I still couldn’t really talk to anyone about what I was going through.  I was furious at myself for letting anxiety and depression take over my life and my college experience.  But I managed to hide it from everyone.  I was social and cultivated some great friendships.  I was even elected to a crucial leadership role in the band.  On the outside, things must have seemed fine.  But on the inside I was a complete and utter hot mess.

Late into my first semester of sophomore year, I saw my psychiatrist again and revealed how I was struggling.  I tried adding a new medication, which seemed to pull me out of my fog.  I got my head together and tried to salvage the semester by withdrawing from a couple of classes (including the dreaded orgo) and focusing on the rest.  I was feeling better, and things seemed to be coming back into focus.  But it had been too late to save my grades.  I received a D in one of my classes.

I tried to move past it – new semester, clean slate.  But then a couple of weeks into the second semester, my house tutor told me he would have to take my grades to the administrative board, and they may ask me to take a leave of absence.  I begged and pleaded with him and other administrators to stay.  I was FINALLY pulling everything together, and I was doing really well a few weeks into the new semester.  During the time that I was fighting to stay, I was able to focus on school with a new fervor.  I aced a midterm, and I turned in a paper that my TA told me was one of the best he’d ever read. 

I actually opened up about my struggles to the house tutor, and I showed him how well I was doing in my current classes.  I was not allowed to appear in person before the ad-board – the house tutor was to represent me.  I did manage to reach out to some of the ad-board members and discuss my situation over the phone or email.  I fought with absolutely everything I had, and I really thought I could win.

But I didn’t.  A month into the new semester, they came down with a final ruling that I needed to take a year off from school, and I was required to work full time and go to therapy.  They shut off my school email account and key card access.  I was destroyed.  I had to leave all of my new friends.  I had to leave the classes I was finally doing well in.  Most devastatingly, I had to leave the band, and my leadership position within it.  I had to leave them suddenly without a conductor, in the midst of the hockey playoff season.  I gathered the other senior leadership of the band, and told them part of the truth.  I don’t even remember what all I said, but I don’t believe I explained it well, because there was a lot of confusion and anger, and I don’t think they, or many of the other members of the band at the time, ever forgave me.  Not that I really blame them.  While I knew my own struggles, I had only even partially shared them with a select few people.  From their perspective, I was fine and then I was gone.

I went home to Florida, completely shattered.  I didn’t tell any of my friends that I was home.  I laid around the house crying for weeks on end.  I couldn’t believe I had let this get the better of me.  My whole world had fallen apart.  I can’t help but wonder if the ad-board would have made the same decision if this had been a “physical” illness.  If I were recovering from lupus or diabetes or some other illness that had caused me an acute crisis that I had overcome and was finally being treated properly for…would they have forced me to leave like they did?  My guess is no, although I suppose I can’t prove it, and I also suppose it doesn’t change anything now.  But that thought will always bother me, and it saddens me to think of other people going through the same thing.

I did eventually pull things together, somewhat.  I got a job and then a therapist who ultimately helped me a lot.  I went back to school after my mandated year, but it was never the same.  I’d lost some friends, and a lot of trust.  I felt like an outsider.  I did make new friends, and even patch up some relationships with old ones, but I never fully recovered. I didn’t ever really try to explain what had happened, even after I came back.  I did open up to a few people, particularly new friends.  And that helped somewhat.

But nothing could erase the scarlet hyphen; I was now Class of ’06-’07.  I never regained a senior leadership position in the band.  My grades were below average, but enough to keep me out of administrative trouble.  I didn’t have that same zeal and desire to achieve that I’d once had.  I didn’t feel the same optimism and hope I’d felt before.  Something broke deep inside me when they forced me to leave school, and ten years later it still hasn’t completely healed.

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When I started dating Mat, my now-husband, I made a conscious decision that I would hide my “issues” from him as long as I could.  While taking the bus to his place for our first date, I was so panicked I nearly hopped off.  I had to take a fairly whopping dose of Klonopin just to get myself over there.  He was nice enough to order Chinese food while we watched a movie, and I ate about 3 bites of it.  It’s fair to say I had to be heavily medicated for our first 4 dates or so.  After that, I started to feel more comfortable.  And then one night, within our first month of dating…it just came out.  I told him that I have really bad panic attacks, and that’s why I didn’t eat on our first date.  He paused for a moment/eternity, and I immediately regretted saying anything.  I was sure I’d ruined this budding relationship.  But instead he said “Well, what can I do to help you when you’re having one of these attacks?”  I burst into tears.  It was the sweetest response I’d ever gotten.  For anyone faced with a friend, family member, significant other – that’s exactly how you should respond.

Starting to tell people has actually not been nearly as traumatic as I thought it would be.  The reaction is always positive, or at worst neutral.  Some people express surprise that I’ve been hiding it.  And a LOT of people tell me that they or someone close to them have had similar struggles.  It’s amazing how many people out there suffer with these same issues, yet no one really talks about it!

I’ve come to realize that love and support are the keys to getting through this.  Without my incredible family – particularly my parents and brother, I never would have been properly diagnosed and treated.  They could have given up on me, and I probably would be a shell of a person in an institution somewhere.  Instead they went out of their way to support me and put up with my “special” needs, even if it meant always taking two cars to restaurants so that I could escape if I needed to, or flying 1200 miles at the drop of a hat so that I could have someone there who understood me.

Some of my best friends have responded with love and kindness once I’ve told them the truth.  They’ve sat with me and held my hand or even held my hair back during panic attacks.  They’ve left parties with me to walk outside in the freezing cold because I just needed to get out.  You all know who you are, and if you’re reading this, I hope you realize how incredibly important you are to me, and that I wouldn’t be where I am today without you.

And my husband.  I can’t even begin to explain how amazing and supportive he is.  I still struggle with some of these issues even today.  He married me knowing full well that I will probably struggle with this for the rest of my life.  And he’ll be by my side to love, support, and help me.  He’ll hold my hand and rub my back and tell me “I gotcha, I gotcha”.  When I had a huge panic attack while hiking recently, he helped calm me down by sternly telling me “If you don’t think I can carry you down this mountain, you’ve got another thing coming”.  Mat, there are not words strong enough to convey how thankful I am for you, and how much I love you and will strive to provide you with even a tiny fraction of the life-saving support you have shown me.

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So…why did I write this? 

First of all, I wanted to stop hiding.  I made it my New Year’s Resolution to be more honest and open about this.  I want to share my story, I want to get it off my chest.  For some people who know me well, it may offer an explanation or a different way of looking at things that they may have thought they knew about me.  Also, I’ve noticed that I feel “safer” when I have someone around who knows, who I can confide in.  So maybe being able to say “Hey, I’m really struggling with some panic right now, give me a minute” will take away some of the stress.  I won’t have to make excuses for why I’m not eating, or for why I need to suddenly leave.  Maybe I can finally just tell the truth.

I’m not sharing this because I want pity.  I just want people to understand a perspective they might not have considered.  I want people to know that this exists.  I want other people to feel like they’re not alone, and like they can talk about this too.  For anyone who this story resonates with on a personal level, I’m sorry for what you’re going through.  But I hope this makes you feel less alone.  I hope this inspires you to share your story with someone – whether it’s me or your parents or a close friend or even the whole internets.   And for anyone who hasn’t personally struggled with this, or watched someone close to you struggle, maybe it gives you something different to thing about.  That friend you might see as super flaky, or that person whose behavior is a bit off sometimes – maybe they’re dealing with a really difficult mental illness.  You just never know.  A narrow idea of someone with a mental illness may conjure up an image of someone rocking back and forth in a mental institution.  While that may be one representation of it, there are so many more who are seemingly productive, functional people who have an internal struggle that they spend a lot of their time and energy hiding from most of the world.

So…do with this as you will.  If you read this whole thing, thank you for caring and for “listening”.  If you see me, you don’t need to treat me any differently.  I’m not fragile, I’m not broken.  I just have a chronic illness that I’m dealing with, like so many others.  If you want to ask me a question about it, go ahead.  If you want to share your own story with me, please do.  I’d be honored to lend an empathetic ear.  If you want to share my story with others who might be dealing with this, please share freely.  I don’t want to hide anymore.  I’m not saying I need to go out and become a crusader for awareness of mental illnesses, but dang it, it’s time somebody started talking about it!