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?
Sunday, September 29, 2013
Saturday, September 21, 2013
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!
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!
Friday, September 13, 2013
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.
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.
Tuesday, September 3, 2013
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/
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/
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