Unpacking the Bricks

 Well, I did it.  I told another friend about the PCOS.  There was no pre-planning on my part and it sort of just happened.   And oddly enough, it wasn’t really a big deal, and I wasn’t particularly nervous or embarrassed.  In fact, it was kind of freeing.  Perhaps it’s as if I’ve been walking around carrying a backpack full of bricks since I was 15.  And now, with every person I tell, I get to remove one brick from my bag.  I can’t wait till the day it’s empty.

I realized a few days ago that I can’t really tell these confused and heartbroken young girls with PCOS that it gets better, if I keep my own condition a secret from my friends and family. How can I advocate a better life when mine is cloaked in secrecy?   And while it’s true that I am a very private person by nature, I know that I must open myself up and share what I’ve gone through with this shitty ass syndrome.

PCOS sucks.  But as much at it sucks and as much work as I still have to do to truly free myself of carrying around this backpack – I want to live.  And I want to beat this shitty ass syndrome into submission.  And I know that my darkest days are behind me with this disease.  It can ever be as bad as it was when I was a teenager.  I look back on that time and I honestly cannot believe I survived.  I think of that girl and that time in my life and how truly miserable I was.  I am so grateful that I made it through.   And I want other young women to see that they too can make it through to the other side.   It’s not hopeless.

It’s not hopeless.  I say this because I am constantly reminded of what a person dealing with this condition, particularly young girls and women, feel and endure.  Wordpress, the host of my blog, tracks the search terms people use when they connect to this site.  And guess what the number one search term people Google, which leads them to my blog?  PCOS and suicide.  That is how people come to find my blog.  Sadly, the other search terms include:

– Surviving PCOS

– PCOS sucks

– Living with PCOS sucks

– I hate myself PCOS

– PCOS depression

– PCOS loving yourself

– Pain and PCOS

There is a lot of pain out there.  And this is exactly why I must unload the bricks from my back.  PCOS is not our fault.  And we should not be embarrassed or ashamed by all the shitty symptoms this condition unleashes on us.   I get so angry when I think of how much of my life has been devoted to being defined by the PCOS and how much power I’ve given it.  So, so, much power.  But no more.

No more.

For Holly: Don’t Give Up!

I received a comment the other day on my post, “The Pursuit of Normalcy,” from a young woman with PCOS who felt alone and had been thinking about suicide.  I had so many emotions after reading it that I felt compelled to respond to the young woman, Holly, who wrote it.  However, it occurred to me as I writing a response to her that surely, if she was experiencing these feelings, and I had experienced these very same feelings – than there must be other young women out there with PCOS going through the same thing.  And so, I decided to make a post out of my response and respond to Holly and all the other young women out there who feel isolated and alone.

First, let me say this – it does get better.  And I know this is such a lame and generic thing to say and I hate hearing it and typing it because I often find the expression to be a total fucking lie.  And I’m not saying that you are going to wake up one day and magically feel a whole lot better about yourself.  I spent years dreaming and praying for that magical day to happen – it never did.  However, it will get better – but only if you do all the hard work.

When I decided not to go through with killing myself  that fateful night some fourteen or so years ago, I knew that I had to get better.  I knew I couldn’t continue to live the way I was.  I couldn’t feel that way anymore.  It was too much.  And when I chose to live and get better, I knew I couldn’t go back to the way things were before.  Like the great line from the film Shawshank Redemption, “You better get busy living, or get busy dying.”  I wanted to get busy living.   But no one was going to save me..  No one in my life knew what was going on with me so they had no idea what I needed to be saved from.  So, I had no choice but to save myself and figure out how the hell to live.

How do you save yourself?  What the hell does even mean?  It means that you have to figure out what you can do to start feeling better about yourself.  For me, this meant going to my doctor and having them put me on medication that was going to regulate my periods, and skin and help with the excess hair (something I later was able to do through diet and exercise).  And this also meant, I was going to start getting hair removal because I knew I was never ever going to feel confidant or comfortable facing the world in the condition that I was.  That was such a huge thing for me.  So much of my self-imposed prison and inability to function normally around people was because of the damn hair.

Of course, all of that stuff is easier said than done.  And it’s a lot of work and time and effort. And things like hair removal costs money.  But if you feel like you need it to function – beg borrow, save – do whatever it takes to make it happen.

I would also advise you to tell someone in your life, someone not in the medical profession.  It took me so long to do that.  And really, only one friend in my life right now knows my  PCOS story.  And that only happened this year.  Please don’t wait that long.  I know it’s so hard to talk about.  So fucking hard.  Honestly, it’s the hardest thing I’ve ever had to talk about.  When you’ve spent so much of your life hiding and feeling ashamed, it’s no small feat to just start opening yourself and your story up to the people in your life.  But I can tell you from my own experience, sharing my story has been freeing.  And I am becoming so much more comfortable talking about my journey and this shitty ass syndrome.

And I know how hard all of this is.  You cannot change overnight.  It takes time.  And it takes tears and pain and fits of rage and anger.  And I know when you are at the very bottom flailing around and submerged in darkness – it becomes nearly impossible to see light.  It becomes impossible to believe that you and your life will ever get better.  It all seems so damn impossible.  And you feel so totally and completely alone.   And you feel misunderstood and misrepresented.  And no one will ever be able to love you because you will never be capable of loving yourself.    How can they?  You are nothing more than a  freak.  End of story.

But guess what?  I got lucky and found out that the story doesn’t have to end there.  That you have the power to change how you want your story to end.  And that is why I say to Holly and all the other young women in a similar place — please don’t give up!  Don’t let the PCOS win!  It’s not worth it.  This shitty ass syndrome has robbed us all of so much – don’t let it have the last word.  Don’t give it that power.  You are so much more than the PCOS.  So very, very, very much.  Please remember that.  And remember that there is always a community of women just like you available to talk to you and help you down from the ledge.  An online community of women who truly understand you and everything you are going through.

It can get better.  I promise you, Holly.  I am living proof of that.  I am proof that you can come out the other side.   Proof that eventually the good will outweigh the bad.  Proof that one day you will find yourself just as I find myself today, so incredibly thankful and grateful to be healthy and alive.

PCOS & Depression: The Chicken or the Egg?

This morning I was doing some research on PCOS and depression and came across an interesting statistic.  According to a published medical study, suicide attempts are 7 times higher in women with PCOS than women without.  As someone who once attempted suicide at  the age of 18, I am not at all surprised by the statistic.  Is anyone, really?

As with so much of this syndrome, there hasn’t been a great deal of research done on the association of PCOS with depression.  The medical community appears to agree on the fact that depression is in fact a symptom in many women with PCOS but they can’t seem to agree on whether or not the depression is physiologic or psychological.  Or perhaps both.  Is there an actual imbalance going on inside the body that is causing the depression?  Or are women merely depressed because of the symptoms of PCOS that are reeking havoc on the female psyche?  Personally, I believe it’s a combination of both.

For one thing, when PCOS is at it’s worst your body is completely and totally out of alignment. Your hormones and insulin and everything else is out of whack.  So, it seems only logical that there would be some sort chemical/biological imbalance that was going on inside.  According to one of the studies:

“Hypothalamic, pituitary, and other end-organ system dysregulation occurs in both  PCOS and affective disorders, which share clinical and biochemical markers  including insulin resistance, obesity, and hyperandrogenism.”

So,  we’ve got the imbalance going on within our bodies that’s making you feel depressed, and now we have all the shitty ass symptoms from the imbalance that’s going on outside the body.  According to the same study:

“Hirsutism, acne, obesity, hormonal disturbances, fear of infertility, and  psychological distress—may damage their self-esteem and female identity.”

The research study concludes its assessment by stating:

“Previous studies have found that PCOS is associated with decreased quality of  life and self-rated mental symptoms. This study demonstrates that PCOS is also  linked to psychiatric syndromes as verified by structured clinical assessments.  The clinical implication of this study is that clinicians treating women with PCOS  should be aware that these women are a high risk group for common affective  and anxiety disorders as well as suicide attempts.”

I’ve seen a lot people use the term, “decreased quality of life, “ when discussing PCOS.  I’m always so disheartened by that .  It just makes me so sad.  It makes me sad because I think that PCOS, unlike many conditions/diseases is not an automatic death sentence.  It’s not like Parkinson’s or MS that can and will only get worse over time.  PCOS is something that can ultimately be dealt with.  You can get better in many respects and go on to live a perfectly normal life.  But I feel so much of dealing with PCOS is contending with the sort of mental prison that many of us can inflict on ourselves.  We feel so different and inadequate that it’s inevitable that one would experience a decrease in their quality of life.

I think about being a teenager.  About dealing with this condition that I kept secret from every single person in my life out of embarrassment and shame.  At the time, I was clearly depressed.  For years I existed in this debilitating darkness that I kept hidden deep inside of me.  But if you had asked me if I was depressed, I probably would have said no.  I wasn’t depressed at all.  I just had this one thing that made it really hard for me to be happy.   And I’m sure people would have believed me if they asked since I was really great at pretending.  What I presented to the world was the opposite of my reality.  The opposite of what I was really feeling.

For years, I resided in two worlds.  In one world, I was the Stephanie that was silly and cracked bad jokes and tried to get people to laugh, and I was responsible, hard working and studious.  But then there was the other world.  The other Stephanie.   The world was oblivious to this version of me.  I made sure of that.  There was no light in this world.  Only pain.  Only darkness.  I was physically and emotionally drowning.  There was no hope of any kind in this world.   I wanted to disappear.  I wanted to die.

I’m honestly not sure how I ever made it out.  How I managed to escape that world.  But I did.  I thank God every single day that I did.

I think that’s part of the reason why I’ve continued to keep all of this stuff buried inside.   Why, all these years later, I still haven’t really talked about what I’ve gone through with the people in my life. There’s a small part of me that worries about drudging up the layers and layers of toxicity that I once swam in.  I worry that bringing it back to the surface could do more damage than good.  It’s as if I was once a raging alcoholic, but then after years of drinking I went to rehab and got better and stopped.  And then one day I started up again and ended up binge drinking.  And it had been so long since my last drink that the reintroduction of the alcohol back into my blood stream caused my body  to go in shock and it stopped working.  I guess that’s a bad and extreme example, but I still worry.

In hindsight, I realize how depressed I truly was.  I can see how big of a role depression actually played in my life.  And I think maybe it still does in some ways.

I’ve been giving some thought about possibly going into therapy.  To try it out and see what if any good can come from it.  A friend of mine told me about her therapist who described this invisible back-pack that we’re all wearing around on our backs and how we pack stuff down into it and we don’t even realize it.  How we just walk around with this back-pack and let it weigh us down and let it prevent us from ever truly moving forward.  I’ve been carrying my back-pack around for a really long time.  I think it’s time I start unpacking some of that shit.  It’s time I start freeing myself of the burdens I’ve been carrying around on my own.  I’m ready.