Meeting the Unicorn

I meet another girl with Crohns disease this week.  She also has an ostomy.  We met up near my work on Tuesday and we meet near her house on Thursday (both public places since we meet on the internet). 

It was very refreshing and wonderful for both of us to actually meet someone else with such similar experiences.  We kept looking at each other as if the other one was a unicorn or some other mythical creature we had only read about in fairy tales.  I have never met another person with Crohns before, let alone and ostomy, and it was nice to find her to be so regular and normal.  It made me have more faith that when people meet me, I seem regular and normal to them too.  I have never been sure of how it must feel on the other side of this. 

What struck us both was that neither one of us seemed sick to the other one, although we know from talking to each other that we are both going through some things right now with our health, we wouldn’t be able to tell from looking. 

It also struck me how similar our experiences, not only with this disease but in our lives, have been.  Although I believe that this disease was always with me, I have often wondered if perhaps I hadn’t had certain emotional and environmental triggers in my life, if the disease may never have presented itself at all.  Of course, I will probably never know for sure if the stress in my childhood, or my eating disorders triggered my disease, but it is something I think about. 

You never really know how you are supposed to deal with a disease, or how others would feel or what they would do in your situation.  I was in and out of the hospital a lot last year, and sometimes I felt very weak willed for having to go back in.  Then one day I asked the ER staff if they saw many people come through because of Crohns disease and they told me that people with Crohns have to be admitted to the ER all of the time.  Knowing that I wasn’t the only one who couldn’t “just deal” with the pain all of the time made me feel sort of free in a way.  It wasn’t just me.  I wasn’t weak, and I wasn’t alone.

As you can imagine, actually meeting someone who had been through things I have been through with this disease and had felt the same ways I have felt, had an even stronger impact on me than hearing about people like me from the ER staff.  Hearing my new friend tell me about her surgeries and her pain made me see her as strong, and it helped me to see how strong I have been too.  Although we have both gone down our own path with this disease, it was kind of amazing to realize that there was someone out there who was like me.

It was an added bonus that my new friend seems like a very nice person and someone who I would want in my life, sick or healthy.  I hope that she and I stay friends for a long time.  I have lots of supportive people in my life and I am thankful for every single one of them, but sometimes it is nice to just sit down and talk to someone who has been where I have been.  Sometimes I think I just need to be face to face with another unicorn. 

A Very Brief Introduction to my Eating Disorder History

Of course, my relationship with my body is far too complicated to really ever put down on paper in a perfect way that would explain it all quickly and neatly, but here is a first attempt to explain one facet of it that explains a great deal about who I am based on who I used to be.  I used to be an anorexic, and as is the nature of the disease, while I was an anorexic, I wasn’t much else.  There is no room for anything else when your thoughts are so plagued with self hate that the idea of people looking at you makes your skin crawl. 

As a child and a teen I felt that my life was completely out of my control.  I felt weak and useless, and I longed for one thing in my life which I could have some tiny power over.  I chose my body.  Although I had thrown up after eating and gone without a meal or two on occasion starting around age 12, and had thought of myself as fat starting around age 8, I don’t consider my eating disorders to have really started until I was about 14.  This was around the same time that my Crohns disease was diagnosed, and I felt my life spiraling even further out of my control than it ever had before. 

Of course, I did not consider myself anorexic at the time.  Even though I was routinely starving myself, anorexics were girls who were skinny but saw themselves as fat.  In my eyes, I actually was fat, so I didn’t fit the mold.

In order to be good at anorexia, there has to be some part of you that wants to die, or at least is willing to die in order to be skinny.  There was a time in my life when, if anyone had asked me if I would have rather been thin or happy, I would have said “happy,” but I would have thought, “how could you possibly be happy if you weren’t thin?”  Of course, if I had truly succeeded at anorexia I would be dead now.  There is always more weight to lose, no matter how thin you get.  There is always some little bit of skin you can grab, call “fat” and hate yourself for. 

The turning point for me came after three days without eating or even drinking water.  I didn’t brush my teeth because I was afraid that the taste of tooth paste might make me hungry and I would give in and eat something.  When I got on the scale and saw the final number, even I was shocked. At 16 years old and only 72 pounds, even I could see that I wasn’t going to live much longer if I kept doing this to myself, and to my surprise that scared me enough to stop.    

My eating disorders weren’t over however.  Once I realized that I was actually going to die, and maybe I wasn’t ready for that after all, I turned to my anorexia into bulimia, which allowed me live and also to be a slightly more highly functioning human being.  Still, anorexia felt better than being bulimic.  If you are anorexic and you are able to not eat and see the number on the scale go down, then you feel that you are winning at something.  Throwing up after you give in and eat means you were weak.  You couldn’t stop yourself from eating, and you just lost again.  So, for me at least, anorexia felt good, bulimia felt bad, athough I didn't give eather disease a name when it came to what I was doing to myself.  Also, you can gain weight and even be chubby when you are bulimic.  I myself went back and forth between being chubby or being in a healthy weight range, which helped hide my disease from my loved ones.  I still saw myself as disgustingly fat however, and went back and forth between the two disorders for years. 

My eating disorders continued for a total of seven years, until at the age of 21, I just didn’t want to live that way anymore, and I decided it would be better to be fat and have some kind of a life and some kind of respect for myself, then to be the thinnest girl on the planet, but be alone hating myself.  I’m not quite sure how I found the strength to stick with my decision, but little by little, I began to heal my body and my mind.  It wasn’t easy, but somehow I was finally brave enough to try to live my life, and stop using my eating disorders as a way to hide from the world. 

So, I gained weight.  Perhaps even too much weight, but it had to happen and I tried to let it go and not let it be the focal point of my life.   I had to re-learn how to eat when I was hungry, and also re-learn what it felt like to be hungry, which is oddly something you can forget when you try to ignore what your body needs for so long.  I didn’t have to just teach myself how to eat; I had to teach myself how to think both about food and its relationship to my body.  None of this was easy, but nothing that really matters ever is. 

It took a few more years after my turning point at 21 for me to become comfortable in my body for the first time, and like every other living being on the planet, I am still a work in progress.  But, I work at it.  I find things I like about myself and try to learn to like the things I don’t, or at very least accept them and not obsess over them.  I am still a woman, and I am still subjected to the same  poison every other woman is that tells us we aren’t good enough because we don’t look like the airbrushed hanger on the glossy page of some magazine.  But I am a grown woman now, and I know how to say to myself, “No.  You will not give into this.  You are better than this.  You won’t let your mind be that sick again.”

Of course, all of our fears about our bodies and ourselves come from somewhere, and at the root of mine there is my mother’s voice that I can still hear telling me that I will never be thin, that I am ugly, stupid and not good enough.  The difference now is that I recognize these opinions as hers and not mine.  Those thoughts may eat at me from time to time, but they are not mine.  They are not mine.  They are not mine, and I am no longer hers.

My weight still goes up and down, but it is in a healthy range, and I am at peace with that.  I am okay with myself inside and out.  I belong to myself, my body belongs to me and my thoughts are my own.  I have finally found my power.    

Taking Up Space

Is it weird that I sort of like taking up more space in the world?  When I was supper skinny (and supper sick), I felt like I was almost not there.  Like I might be fitting into a certain type of mold that would be accepted by everyone, but not really noticed by anyone.  Now that I am a healthy weight, with all of the lumps and bumps that go with that, I feel like I have more of a presence; that I am more of a real person somehow, moving through the world curvy and pretty and happy.    

If I pick myself apart, each piece looks too big or too squishy or too imperfect, but if I look at myself as a whole, I think I look really beautiful and soft.  I don’t feel like I look like just any girl trying to fade into the background, I feel like a lovely woman who doesn’t look like anyone else; who just looks like me. 

It’s not like I suddenly think I look more beautiful than anyone else, I just feel like I have my own sort of loveliness that is only mine and not like anyone else, so why compare?  I don’t think I am perfect, I just think I am myself, and I am more than just okay with that, I am happy about that.  Maybe some people think I looked better before.  Some people cannot understand that not everyone is happiest when they are restricting their bodies.  That is fine.  Everyone is entitled to their opinion.  But I read a quote once that really stuck with me and it goes something like this:  Other people’s opinions are none of my business. 

So I am going to stay on my quest to be the healthiest, happiest version of myself, and I am going to realize that part of being healthy is accepting yourself for whatever you are, and loving yourself for it too.  I am a part of this world.  I am supposed to take up space in it.