Being your own sexual health advocate

I had to be my own sexual health advocate. I know I am not alone. Sexual health education for people is disabilities is a topic that is so needed but rarely discussed.

I am Angela, a 42 year old woman with Spina Bifida. I am a widow. I lost my husband to cardio-myopathy (an enlarged heart) when I was 39. I now live with my boyfriend and my two cats. I have been very fortunate as I found two incredible men in this lifetime.

I met my husband when I was 18 years old and still in high school. I didn’t date much before I met him. I remember being in high school and feeling like I was the only one who didn’t date. I always felt like the “odd one” and I felt like a loner. I still do at times. It is a part of who I am. I have learned over the years to accept that part of myself rather than feel ashamed of it. I didn’t have many friends, but the friends I did have were good, loyal friends who I am grateful are still in my life today.

I remember feeling depressed in high school because I didn’t have a date for my junior prom and feeling that same dread as my senior prom was approaching. Until a friend of mine suggested I ask a male friend of hers. I made the call and asked him. He agreed and we went to the prom together. He and I were both drummers. He was impressed that I was a drummer with a disability. Over the next few months, our friendship developed into something more. Nine years later we were married. He was my first sexual partner.

The obvious part of my disability is that I have poor mobility. I have walked with braces and a crutch since I was young. Today, you may also see me with a rolling walker or a wheelchair. This, however, is not the worst part of my disability. The worst part, for me, is bladder and bowel dysfunction. It is embarrassing when I have to leave work, or when I am out with a friend, and I have to leave because I suddenly can’t control my bowels. It is embarrassing when I am on a dinner date and I end up with gas. It is embarrassing when I become intimate with a partner and have to admit to him that I am wearing a diaper.

I had several concerns about sexuality and my health when I started to become sexual active. When I would have sex, I thought I was peeing myself. I would ask my doctors about it, but never got a good answer, except to “Go to the bathroom before and after sex, to avoid infection”. They never told me there was such a thing as a female ejaculation. I guess they didn’t think of the years of torment I would put myself through, trying “not to pee” during sex by not drinking water, constantly running to the bathroom and nearly dehydrating myself when planning to have sex.

My sexual health issues have changed as I have gotten older. As I am aging, my health seems to be declining in general. I am less mobile. I also am planning on getting a hysterectomy later this year because I have a prolapsed uterus. The prolapsed uterus increases my bladder problem and makes sex difficult. I wish I had known more when I was younger about kegel exercises and ways to strengthen my PC muscles.

I now know a lot more about sexual health thanks to a friend who introduced me to Pure Romance. I also know more about my disability and sexuality. I share my experience here candidly because I want to help other people who may be like me. I hope to be a resource for women with disabilities who typically do not have access to this information. I am not a doctor, but I am a person with a disability who has had to advocate for my own needs and find answers to the questions I have had over the years.

To follow my blogs and posts, follow the hashtag #DISirABILITY

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