My First Conference

Ever since I joined the Androgen Insensitivity Syndrome support group, I knew there was an annual support conference they held.   I was finally able to make the conference this past summer, which was held in Boston.  I was excited to go to the conference for many reasons.  First of all, I have been communicating and receiving support online for close to ten years, Boston was a city I have always wanted to check out, and my husband was going with me and we were making a vacation out of it!

Getting to Boston and taking off work was one thing.  The people who know of my AIS diagnosis knew about the conference and my excitement for it, but others just knew I was going on vacation to Boston, but didn't really know why.  I knew that I was finally going to meet many other affected women with AIS.  Up to this point, I had only met one other person in real life and participated in the online community.

Once I got to Boston, my husband and I had some time to settle in and take in some sites.  I love the city, and get quite jealous of people that get to take the metro to work.  As the conference grew closer, I was ready to learn and get involved.  I had a few other attendees warn me about taking breaks and taking care of myself if I felt overwhelmed or exhausted by the experience, but knowing myself and with my social work background I knew that I was at a good place to monitor if I was having those thoughts.

I attended sessions about feeling different, discussing fertility options, mental health resources, and most importantly- sharing your story.  I was finally in a place where I could openly share my story from start to finish and listen to the story of others.  I was in a room full of women nodding my head and thinking "you sound just like me!"  It was an amazing feeling to bond and unite together in such a setting!  I also got a kick out of seeing the youth who attended the conference, and noticing through the education, support, openness with their families about being born intersexed, they seem much more confident than I ever did at their ages.  I hope they continue with that attitude.

Intersexed advocacy was a hot topic at the conference, and starting with bringing our stories to the public.  We are silent in the population, because there is fear and shame behind gender ambiguity.  Some amazing people have started to share their stories online on a website called the interface project- http://www.interfaceproject.org/.  We want to increase education and awareness in the general public for what it means to be intersexed and make sure we maintain our rights as human beings.

The most fun times were when we got to hang out and socialize and just get to know each other.  We all have this major thing in common, but we are all so different with our personal lives, where we live, our hobbies.  WE ARE SUCH INTERESTING PEOPLE!  It's a wonderful thing to have this conference to bring us together- too bad it's only once a year!

Finally, I had mixed feelings about having my husband with me.  I knew I was going to have a different experience at the conference alone or with a friend who was born intersex.  He participated in his own sessions and did his own thing at times.  Some of the other parents saw him as a role model of someone who accepted his intersexed wife for who she was, giving them hope for their daughters (which was cool, but every relationship experience is different).  Overall, I am glad he went because we got to have some discussions as a couple that validated our marriage and feelings to one another.

I left the conference feeling validated and empowered.  I have grown as a person and as a couple.  I plan to go to more in the future, starting with San Francisco and hopefully bringing my mother with me.

Leo and I After Finishing a really HOT Boston 5k

Happy Intersexed Awareness Day!



I have joked in recent years that October is the "month of Amy" as it starts off with my birthday and ends with my remission day.  My remission day is when I had my last chemo and I was set free from cancer treatment.  But then I got married in October.  But also October hold Intersex Awareness Day, which is the 26th!  So many reasons why this is my favorite month and to celebrate- besides pumpkin spiced lattes!!

No, I didn't get any presents today or anything special for being born intersexed (the day isn't over yet!)  But I would like to talk a little about why this day is so important.  We as intersexed people have a voice.  Many of us are afraid to use it.  Our voices have been stifled since we were born and our parents and those who love us very much were afraid of how society would view their babies that were born differently.  Things have started to get better, but there is still stigma and many intersexed people still feel like they cannot be themselves and compartmentalize how open they are with friends, family, and others in their lives.

Our community is also trying to increase advocacy with medical issues so we can have more control over our bodies.  One big example is people born with variations of sexual anatomy should be able to choose what they want to be and not have it assigned to them.  Another issue is having medical staff willing to work and try different hormone options.

The last reason why a day such as today is important is that many people don't know we are out there or even think twice about us.  We are a secret part of the population that you can hear in statistics or in theory, but many people have never put a name or a face to it.  We are out here.  We exist, and there are quite a few of us.  We have rights.  We continue to grow more stronger and more confident each day.

Finding Love

October 9th, 2010 was a day for many years I thought would never happen.  I got married to my husband, Leo!  We met through an online dating site, and I wasn't sure if we were going to be a good fit because he is younger than me and because of his "non" religious status.  But there was something intriguing about him and I wanted to get to know him better.  It wasn't love at first site, and Leo wasn't even sure if he was attracted to me at first (as I recall).  But the more time we spent with each other, the more we wanted to be with each other.


After dating for about five months, Leo proposed to me in the gardens in the Getty Museum while on vacation in Los Angeles.  I said "YES", and it was perfect!  There was only one problem...I hadn't told him about being intersexed yet!   Everything I knew about him up to that point led me to believe he had accepted me for who I was.  I told him about being a cancer survivor and not being able to have children of my own, and he was already on board with adopting someday.  But from fear and stigma I was not up front right away about being intersexed with him, which is something I deeply regretted!

I finally divulged my secret to him late one night while lying in bed.  I worked up anxiety about telling him and was having a hard time getting to sleep.  So I knew a long sleepless night was going to be ahead of me if I didn't say something!

The fear of telling someone I loved I am interesexed, and how they may react kept me from getting close to someone for so many years.  I have finally put myself in the position to overcome these obstacles and push beyond my comfort levels.  But being in a relationship and eventually getting married were things I truly wanted, and I am glad I took the risk even though I wish I had handled some of the things differently.  I also recognize that I had a positive experience, and an grateful my husband accepted me for who I was.

I wish there were more men out there like my husband, as regular and humble as he is.  He is also open-minded and a self-proclaimed feminist  Together we make a great team.  Together I am free to be myself, openly and even loved for just being me.

The Realization

My light bulb moment about what it meant for me to be born intersexed came when I was 24.  I was working with young adults in HIV/AIDS prevention, and I was in my office and decided to do an Internet search for the term "Complete Androgen Insensitivity Syndrome", which is what I have seen listed in my medical charts.  And BOY was I in for a surprise.  This was the first time I was presented with the terms "intersexed" and was educated that although I developed as a woman, my chromosomes were male.

Up until that point, I had learned bits and pieces about my body and reproductive abilities along the way.  My parents told me before I was 12 I was not going to be able to have children and get my period like the other girls, and I would have to have a surgery in the next couple of years...but it wasn't too clear as to why.  But then came my cancer diagnosis and that took the spot light away from my reproductive health concerns.  I started taking hormone replacement therapy (hrt) and thyroid medication (due to having radiation to my head/neck) and didn't really think much of it because I was really good at following the orders of my doctors.  Because heck...I just wanted to get through my cancer.

I have a memory of going to a doctor appointment as a teenager with my endocrinologist and the resident told me I was born with male chromosomes.  I think that was their big moment of educating me about my condition, but it didn't register with me at all.  Maybe because I came close to failing biology in high school?  In all fairness, it was a quick mention about having male chromosomes and no follow up education or offer of mental health services for emotional support.

Things have gotten a little better over the years for intersexed people to learn about their conditions, but there needs to be some solid guidelines health professionals to follow for educating families and their patients.  Most intersexed people would agree the best way to do this is open and honest education from the diagnosis and continued emotional counseling and support.  There had been too many intersexed people who learned about their diagnoses by doing their own research because they were never told directly by health professionals what was going on with their bodies, and their families were also told by these same doctors to not talk about it.  We are starting to move past this and that is a good thing!

This realization and Internet search at the age of 24 led me to a special place.  An online support group of other women just like me!  I touched base with the group and was quickly accepted.  I knew I wasn't alone and learned many other women out there had stories like mine.   But for many upcoming years I held onto this information like a secret.  Afraid of the unknown of what would happen if other people knew that about me?  My friends would like me for who I am, but what about love?

My Dating Life

This post should actually be titled my "lack of dating life". I will also start off by saying, yes, I am married to a man and am attracted to boys and have always been. That has been my personal preference, even with my male chromosomes. With everything that was going on medically, socially, and psychologically during my teen years, I had developed a timid personality about dating early on.

I would develop feelings and crushes towards different boys, but would never have the courage to act on them. I directed my time towards my family, friends, and education. It wasn't until I was in my mid-twenties and tried online dating and realized it was a tool I could use to put myself out there that I was comfortable with. More comfortable than going out to bars and talking to random guys while out with my girlfriends. There were some successes and failures with online dating, but I did eventually meet my husband online and we'll be married for 3 years this fall.

The next thing I knew my 20's were ending and I still hadn't had much experience with serious relationships. At my 30th birthday party a friend of mine brought a guy who I was acquaintances with and we started to date. I developed deep feelings for this man, and we dated from the fall to the spring. But I recognized some red flags, and never told him about being intersexed. He was divorced and had a child, which he kept at arm's length and also drank too much at times. I never told him about being intersexed because I didn't know how he would take it. With all things considered it was my first long term adult relationship, including long term sexual relationship. Things fizzled after about six months, and I found out the next fall he was engaged and getting married very soon! I was shocked and very hurt! In the end it was for the best, but this was the platform that initiated my confidence to put myself out there face my fears.

Dating for intersexed women can be a challenge. You have to deal with a valid fear of rejection from disclosing information to a partner who you may be in love with. They can either love and accept you for the intersexed person you are, OR rejected you. This situation may be true in many relationships where there is a potential for rejection. But many people aren't holding onto something they feel is a big secret about themselves, or something that has a stigma behind it. It may take a strong partner to be fully accepting of marrying someone who tells you "I am intersexed". But if you can work on the fear of rejection and put yourself out there, if you find the right person...it can be totally worth it!

Higher Education

After high school, I attended Kirkwood, a community college and lived with my parents.  I still had some friends in the area, and we had a good time together.  We were young and were having fun.  But I was still recovering from my chemotherapy treatments.  I would get short of breath even walking to classes and going up a hill and stairs on campus.

At Kirkwood I studdied Disability Services, but my long term goal was to work with cancer patients and their families.   I focused on catching up on the subjects I fell behind in in high school (math, science, Spanish).  I went to school all year round, taking up to 18 credit hours each semester while holding down a part-time job.  I had a balance of classes I enjoyed and even excelled at.  I was proud of myself when I graduated and had my associates degree, but I wasn't going to stop there, I wanted to keep going!

I went on one college visit to Wartburg College.  I loved the campus, and the social work program I ended up majoring in.  I applied and got accepted.  I was excited with the opportunity to go to school there, but nervous because I was a transfer student and had never lived away from home before.  Thankfully, I had a really great roommate who was fun and easy to get along with!  At Wartburg I did well in my social work and most of my other courses.  The two years flew by and were some of the best years of my life!  My most challenging time in college came during my final summer social work internship when I was doing hospital social work.

Months before I started my intern, I noticed a breast lump, but in fear I didn't tell anyone and bottled it up.  I broke down and told my parents that summer during my intern, which led to some emotional uprising.  I had been struggling in my intern before that, but now my social work supervisor at the hospital questioned whether or now I should quit!  I had plans to move to St. Louis at the end of the summer, and start graduate school at Saint Louis University.  I got through my health situation, my breast lump was removed and non-cancerous.  But finished the rest of my internship with much support from my college professor and lots of anxiety.

My two years at Wartburg flew by.  I was again proud of my achievements when I graduated, as I was the only one in my family with a college degree.  That August, I moved to St. Louis to start my masters program.  I was enthusiastic about being in the program and majoring in health/mental health, but at this point I was totally unsure about my path in social work.  Until that summer, I thought hospital social work was where it was at if I wanted to work with cancer patients and their families.  I attempted to maintain a positive attitude during that year and a half program, but my insecurities and stress remained high, and my stress eating started to become more of an issue.

By the time I graduated from St. Louis University, I was overjoyed with my accomplishment and the fact I achieved my goals and overcome so much!  But I started to feel lost and confused about my career path.  During college, I had been working at group homes and people with disabilities, which I truly enjoyed, but my hopes and dreams of being a medical social worker would eventually diminish.  The rest of my career ambitions are for another blog post, but I definitely learned a lot about myself during my College and grad school career.

The Support of Camp

When you are diagnosed with cancer there are a variety of things that happen to you, most are out of your control.  You have to follow the instructions of the doctors and nurses.  You have to because your life depends on it.  The situation you are in can be scary.  Scary to you, and those around you.

In terms of support in my cancer journey, I feel that there was a good rally of support when I was first diagnosed in Jr. High.  I don't feel like any friends were afraid to be around me.  It was a difficult time me because I was attempting to fit in with new people, but wasn't given that chance.  A positive thing was the amount of time I was in treatment was shorter, as I had a couple of months of radiation and was able try and return back to life as usual.

High School was a different story.  I felt abandoned by people who I thought were my friends except by a faithful few.  Some of this may have been my own doing, something I created in my own surroundings.  Because I had a shy personality to begin with, I wasn't outgoing with my cancer diagnosis.  But I am also not the only cancer survivor who has experienced this.  Friends and family tend to rally with support during the beginning, but that begins to wean and their lives go on while yours is in a stand still.  Their lives go on, while you are waiting for yours to begin again. I didn't have any peer support groups to attend with my peers because because they were during the day when I was attending school.  A neighbor was in charge of an adult cancer support group at a local hospital, but I didn't relate to their experiences although it was comforting being around other cancer survivors.

There was an organization I learned about that held a week long oncology summer camp- The Heart Connection.  A week to get out and be with other kids like me.  At the age of 17 years old, I signed up for camp.  I was a bit apprehensive because this would be the first time I would attend a full week camp without other people I knew.  But this would turn out to be one of the best decisions and experiences of my life.  It was wonderful to be around other teens like me who "got it" and went through some of the same expereinces that I had gone through with cancer!  They even have a program for siblings- a camp where the brothers and sisters of cancer survivors can go.

This camp provides support and hope for kids who may be going through the toughest times in their lives.  Most of the cancer support is informal. The camp was designed for recreation where you participated in all regular camp activities like arts and crafts, horse back riding, swimming, etc.  But while you are doing all of that fun stuff, there are opportunities to discuss your experiences and things your other peers cannot relate to. I have continued to be apart of this organization over the years as a volunteer because I believe in it so much.  I am not the only one, because about half of their volunteer counselors and staff have been campers themselves.

There are many organizations like this, but this is the one that was in my area: http://www.childrenscancerconnection.org/

The Second Time

I learned that since I had a re-occurrence of my cancer, I was going to have to have a series of chemotherapy that ended up taking a year to finish.  I had some of the typical side-effects.  The doses of my chemo drugs were not as strong, so YES I lost my hair, but not all of it.  I was only nauseated the day after treatment, and there are some unpleasantness most people don't know about, how certain drugs turn your urine colors, you can get constipated, weight gain (on Prednisone), and neuropathy, and shortness of breath.  Here is a description of the medications I had to take and side effects.  This website is not the most scientific, but it does a nice job of laying the information out http://www.deltronix.com/public/li/moppabvd.html

I continued with my chemotherapy and doctor appointments through the next year, and had my last treatment scheduled for October 31st, 1996.  My counts were too low that day to actually have chemotherapy, so I asked "are you sure it's okay I can be done?"  But I was in the preventative phase of the treatment and there was NO sign of cancer!  I started the routine of doing follow-up appointments, and everything was looking good.  I was told not to worry about the cancer returning, but the doctors want to monitor for some long-term side-effects, which I still happily go to yearly appointments today.

The cancer was gone, but the problem was during that year I had suffered a great loss of friends and social support.  People I used to spend time with and go out with on the weekends were not calling, or even asking how I was doing.  There were a number of people at school who were nice and supportive, but it stings when people you considered friends were not there for you in the long run.  Choir was my sanctuary, where I could go and have fun and be with people I enjoyed being around, but most of those students were not a close friend of mine outside the classroom.  By senior year of high school I was ready to move on and leave all of that behind.  Make new friends and start over.

Side note:  I had realized a few years later that some of my fellow students didn't realize I was re-diagnosed with my cancer- maybe they thought I had gained weights and started wearing hats for no reason?  But after I was re-diagnosed I did not go around school telling everyone I had cancer, and since we had a large student body I can see how some people would not have know.

In Between

After I got through treatment, I attempted to go back to life as normal.  I continued to go to school, spent time with my friends, transitioned into high school life.  I had struggled in a few certain classes, and was working to get caught up in math, spanish, and science.  I started working part-time at a nursing home in their dietary department with some high school friends to earn some extra cash.  I enjoyed working with the elderly folks and chuckeled to myself when they called cancer "The Big C".  I had to go back to the hospital for routine check-ups that started to get further and further apart.  But the summer of 1995 I had noticed the left side of my neck was swollen, which prompted some doctor visits.  I also had a mole on my ear removed from dermatology.  Waiting to hear back any tests results, one day I was home alone when there was a phone call from the dermatology department.  The doctor told me the mole was fine, but then continues to explaine that my cancer had returned.  15 years old and home alone.  No support, no Mom to get a hug from.

The Next Big Thing

After the diagnosis, I continued living a normal childhood.  It wasn't until I was about 11 years old when I got my first indication I was different.  My parents told me that I was not going to develop like the other girls and I wasn't going to be able to have children, and that I would need a surgery.  I didn't fully understand what that meant.  But very soon after I learned this information I was going to have yet another life changing experience.

The fall of 1991 I started the 7th grade.  Sitting in class one day, one of my classmates noticed there was a lump on my neck.  I returned home from school that day and told my mom about it.  She made a doctor's appointment, and we had it checked out.  My doctor suspected something more serious was going on, but put me on medication for Mono, and was going to run some more tests.  My doctor sent me for a biopsy, where I found out that I had cancer.  I was diagnosed with Hodgkin's Disease, a cancer of the lymph system.  For more information of Hodgkin's Lymphoma you can search for it or click here: http://en.wikipedia.org/wiki/Hodgkins%27_disease

After being diagnosed with cancer, I had a surgery to learn what stage the cancer it was in (how much it may have spread), and then started radiation treatments.  The good news was that my cancer was caught early, but going through cancer treatments is miserable when you are in an age when you are starting at a new school and trying to fit in.  When undergoing radiation treament, they mark the body so they know where to line up the machines, and for a number of weeks, I had to walk around school with markings on my face.

I had to miss school for doctor appointments, surgery, and with walking around with markings on my face, I had really started to feel out of place with my peers.  This was at a time in adolescence when I was attending a new school, making new friends, and girlfriends were developing and getting their periods.  I felt like I didn't have much to contribute.  Plus, I was falling behind in certain classes, which added to my despair.  But after a few months and my radiation treatments had ended I was able to work on picking up the pieces again.  I knew stuff about life that most of my peers didn't, but I was ignoring it, trying to fit in.  Trying to just get by.  Trying to be "normal".

From the beginning

When you are starting a blog, you may not know where to begin.  I have tried to think about how to start this blog, and one of my problems is that I have experienced so much in my life that trying to break it down makes my head want to explode!  My simplest answer to that question is...from the beginning.

So here is my beginning.  When I was born in October 1978, I was just like any other new born baby girl.  But when I was about a month old, I had a hernia and operation to correct it where it noticed I had undeveloped testicular tissue.  This is referred to as Streak Gonads.  After further investigating, I was diagnosed with Complete Androgen Insensitivity Syndrome.  This means that I was born with male (XY) chromosomes.  The simple explination of what all of this means is although I am a woman, wih the male chromosomes, I am intersexed. 

From the beginning, I was born different.  From the beginning, I had no choice in the situation that had been handed to me.  I also had no choice in the information and how it was presented to me.  I was vulnerable and impressionable.  Many other things were to happen to me in life, both positive and negative, which I will talk about eventually in this blog.
 
 I am writing this blog for a multitude of reasons.  Some of them include education and advocacy.  There are misconceptions about people who are intersexed, and there are actually more of us than some people think.  Another reason to write this blog is personal.  When you let go of a secret it can be very freeing, and usually less scarey than you think it will be when you rip the band-aid off.  I want to live my life taking ownership of who I am and not being afraid of it.

For more information on CAIS you can search for it or look here: http://en.wikipedia.org/wiki/Complete_androgen_insensitivity_syndrome