“Coming Out” About your Disability or Medical Issues with your Lover

I use the term “coming out” not only in referring to when I came out as bisexual but also when I admit to my sexual partners about my medical issues. Just like I hid the fact that I was bisexual for a long time and even tried to deny it to myself, I also tried to hide some of the more embarrassing parts of my disability. I had the same fears in both situations.

Here’s what I have learned over the years regarding coming out. The more freely I share everything about being me (about being Angela) the more accepting I am of myself. I am me. I am enough and I am worthy of love just the way I am. Hiding who I am and always trying to fit was a hell of a lot of work. There was a lot of embarrassment and shame. Now I know who I am and I own it. And I can finally be happy being completely me. So much so that I am comfortable sharing it with all of you.

It took a long time to get to this point. When I was young, I wanted to fit in. I wanted to be like everyone else. I hadn’t come to terms with my disability. I have Spina Bifida which you may hear described as “split spine”. It is a birth defect affecting the area around the spinal cord. The obvious part of my disability is my mobility issues. I have always walked with braces on my legs. I now either walk with crutches or use a mobility scooter. Most people only know about this part of my disability. The part of my disability that I keep hidden is that I have bladder and bowel issues. When I was growing up in school, I would have accidents and I was often the victim of bullying. I often wear either a pad or a diaper depending on the day.

When is the right time to tell your partner about any embarrassing medical issues? Unfortunately, there isn’t a clear cut and dry answer to this question but I hope I can give you some ideas and examples from my experiences to help you in making these decisions.

I believe that how soon and how much you disclose about your health issues really depends on the nature of your relationship. You would share more as your relationship progresses over time and as you build trust with your partner. A casual sex partner may not need to know as much about your medical issues as a long-term love interest. But a casual partner does need to know certain things that are going to impact your sexual experience.

Tip Number One. Safety First. The number one factor you need to consider in how soon to “come out” about your disability or medical issues is safety.

Let’s talk about casual sex partners first. Before I go further, yes, people with disabilities can and do enjoy sex, and yes, we can have casual sex partners just like anyone else. There is nothing wrong with that. I only recommend that you do it safely. If you have a casual sex partner, they may not need to know every detail about your medical issues. However, they will need to know any issues that are going to affect your good time when you get naked with them, or issues that may affect themselves later on.

 Ethically, you should tell a casual partner if you have any STIs (sexually transmitted diseases) before getting intimate so they can make an informed decision if they want to have sex with you and what precautions need to be taken. If you have any pain when you have sex, that is something that is important for a casual sex partner to know. For example, if you are having (PIV) Penis in Vagina sex and you are experiencing pain, tell your partner. Don’t try to wish it away. Don’t get started and think “well he is enjoying it so I won’t say anything.” That sexual experience you are sharing should be enjoyable or both of you, not just one of you. Plus there are a number of other sexual positions you could try, such as doggie style, where he enters the vagina from behind you, that might be more comfortable… And there are other sexual acts that the two of you could enjoy more. Kissing, cuddling, mutual masturbation, oral sex, some people even enjoy kinky sex.

If you are interested in kink (spanking or flogging) but you have certain areas of the body where you are numb, have less sensation, have scars or other sensitive areas, you need to tell your partner to avoid those areas. Communication in Kink is extremely important. That is a topic for another day.  

There may be other medical concerns that could present a safety issue. For example, if you have a seizure disorder, you want to let your partner know that it is possible you could have a seizure. Telling them about it, and what they can do in case you have a seizure is important. Because you never know when that might happen.

Tip Number Two: Know your body! Masturbate! Before you have sex with a partner, you should be having sex with yourself. Masturbation is not a dirty word. This may also be a topic for another day, but for now, all I want to say is when you masturbate, you learn what feels good, and what doesn’t. You may learn about some areas on your body that have little or no feeling. You want to know this before you have sex with a partner so that you can avoid any possible injury.

Tip Number Three: Avoid surprises to avoid anger/resentment.  If you know something happens to your body during sex, admit to it beforehand. My example is squirting or female ejaculation. Female ejaculation is often in response to a g-spot orgasm and it does come from the urethra (just like urine).  If you know that you are a squirter when you have sex, tell a potential partner about it before doing the deed. Some people enjoy being with a woman who squirts, other people do not. I have written another blog here about female ejaculation.

If you are a squirter, you might feel uncomfortable bringing this up to a partner before having sex but it is very important. It might be hard to figure out the exact moment to bring it up. It’s not exactly dinner conversation, but maybe you can bring it up when you get invited back to your partner’s house after dinner. It’s worth it to talk about it so they can make an informed decision if they want to have sex with you and to avoid an angry outburst or any more embarrassment after the deed is done. I have had wonderful experiences where I told a partner about squirting before we had sex and they were excited to be with a squirter…And we went on to have amazing sex rather than, if I hadn’t told them, I would be preoccupied with worry and anxious thoughts such as  “I hope it doesn’t happen, or maybe I should try to not have an orgasm, or will this person hate me afterwards?.”

Tip Four:  Build trust slowly

When you first meet someone, you are trying to put your best foot forward because you want to impress them. You want them to see you at your best. You wear your nicest clothes, makeup, and your sexy lingerie. Over time, what slowly starts to happen? You get comfortable. You start meeting up in tee-shirts and jeans. You forget about the makeup. You slowly start acting more like your everyday self. You start letting them see the real you. As you are building a relationship with someone, you get to know them more and more.

This is where you can start telling them more about your disability or your medical issues. You can start by telling your partners personal things gradually and see how they handle it. Are they respectful of you and your disability? Do they keep your health information private or are they bragging to their friends or others? Do they ask appropriate questions and offer ways to help? Do they encourage you to be independent? These are questions to ask yourself in this relationship to test the waters a bit and see if this partner is a good match for you. Depending on your health, you may have the option to do this slowly or you may have to tell your partner very quickly about issues. Let’s say you are on a first or second date, and you start feeling sick in the stomach, well then, it’s time to tell your partner, “this is a part of my disability”. I am going to talk more about my own personal experience with that later on in this post.

Tip Five: Communication is key in a long term relationship. That includes a discussion about all your medical issues.

In my honest opinion, your long-term partner(s) need to know everything. It is important to them and it is important for you.  I’ll give you two examples of the two longest relationships I have had and how I handled coming out about medical issues.

My first boyfriend (who I later married), knew like everyone else that I had Spina Bifida and I walked differently. He knew a little bit about my bladder and bowel issues. He knew that I would often cancel dates if I had an upset stomach. He knew I went to the bathroom more frequently than other people. He was the first person I had sex with. He was very understanding of my disability and gave me no reason not to trust him and even in that relationship, there were still things I kept hidden for too long. He didn’t know for a long time that I wore diapers. I didn’t tell him until the day we were moving into our new apartment together, that I self- cath (use a catheter) in order to urinate. That’s something I have done that all of my life but I never thought to let him in on that. He was accepting of it. The problem was that I wasn’t. I was the one who had the issue with it. He and I were in a long-term loving relationship, and we were building our lives together but I still kept these things from him. He wasn’t upset about the medical issues. He was upset that I hadn’t confided in him sooner. He felt like I didn’t trust him and he was absolutely right. Being dishonest and keeping information from him was my shortcoming, due to how much shame I was carrying. The shame only grew worse as time went on until I became honest.

TIP Six: If your medical issues are severe enough, you may have to tell your partner before you are emotional ready to. Take a leap of faith and do it anyway.

Now I am a widow. I have been in a new relationship for the past three years with my boyfriend. I came out to him about my medical issues much quicker than I did with my first boyfriend. He learned all about Spina Bifida pretty quickly. This was honestly, mostly because I felt I had to as my health was declining. I remember dealing with gas pains on our second date. We are sitting on the couch cuddling and here I am farting. When you have Spina Bifida, there’s no holding it in, or waiting to get to the bathroom, it just happens. So much for the romance. This guy was pretty awesome about it though. He actually just made a joke about it. We now both deal with a lot of health issues by using humor. He said “Oh good, we got the first fart out of the way. Now I don’t have to worry about it.”

 I really do believe you can cry about your embarrassing medical issue or you can laugh about it. I choose to accept it and laugh about it. Again, I was very lucky that my guy was supportive of me and understanding of my disability. Since we have been together, I have had more changes in my health, more problems with mobility, more problems with my bladder and bowels and more times that I’d like to admit where these issues interrupted me having a sex life. I sometimes would worry that he didn’t sign up for all these problems when he started dating me. However, being with him, I realize that he loves me and he takes really good care of me. He is in this for the long haul. Again, we use humor as a coping strategy. We talk about poop in our house a lot for a middle aged couple.  When we make jokes about it, it somehow makes it seem lighter and takes a lot of the stress off me.  

Tip Seven: Be authentic. Be true to who you are. Don’t wait.

My best advice is to be authentic in every aspect of your life. I am 43 years old and I am still working to be my authentic true self.  There were so many masks that I wore in the past. I was this version of Angela when I was around my family. That version of Angela around my friends. This version of Angela at work. Wearing these masks and keeping these secrets took a lot of energy to keep up.

When I was dating other women, I came out as bisexual to a few close friends. I still hadn’t come out to my family. My family dynamics are very complicated but that is no excuse. My family members were even introduced to the women I was dating, but I would just introduce them as “friends” of mine. 

 Now that I have been in a long term relationship with my boyfriend, I decided it was time to come out to my family about my sexuality because I realized that my sexuality isn’t about the gender of the partner I am with. It is about who I am. I will always be bisexual whether I am in a relationship with a man or a woman. I think I always felt ashamed of myself for not coming out. I felt like it was taking the easy way out because the two long term relationships I had were with men. When I finally did come out with family, I found out that my they had suspected it all along. We think we are doing a good job of hiding our authentic self from those close to us. Most of the time, they see right through it. They may even see it before we admit it to ourselves.

It took me a long time to bring it all together and just be Angela. No matter who I am with. No matter where I am at. I am me. I have learned to accept myself. If I present all my vulnerabilities and other people do not like it, that’s okay too. There is a great saying I learned from a 12 step program. I attend “What other people think of me is none of my business.” I try to live my life by that today. My husband taught me that as well. That is how he lived his life. Like me or hate me. This is who I am. The interesting thing is once I was able to do that, I was able to love myself and care for myself. Then I was able to find myself a new partner who accepts and loves me.

That is what I want for all of you reading this. Whether you are casual dating, or you just want really great sex, or you are single or in a long term relationship(s). Find what makes you happy. Be honest with yourself and honest with others about who you are. Don’t let your fear and your shame take over.  Find the people that are going to love you no matter what. If your past relationships have failed, keep moving forward. Be true to yourself . Accept yourself and love yourself.

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

My professional background

I am Angela Car, a sexual health educator and advocate for people with disabilities. I am 44 years old and I was born with Spina Bifida. I have a M.A. degree in Criminal Justice and a B.A. degree in Psychology.

In graduate school, I became interested in working with people with disabilities who were either victims of crimes or alleged offenders. I worked as a graduate assistant doing research and I found there was a huge need to support people with disabilities involved in the criminal justice system.

Although there was a huge need, I could not find full time employment specifically in criminal justice and disability. So over the past 15 years I gained experience in a few different areas; from providing substance abuse prevention education for people with disabilities, advocating for access to housing and education, to counseling incarcerated women with mental health issues and addictions.

I became a Pure Romance consultant and received additional training in sex education. I realized that while I am not a great salesperson, I have a passion for educating people. So I no longer sell products. I am grateful for my experience as a Pure Romance consultant because it reminded me of what I am passionate about and gave me confidence to go after my goals.

My focus now is on education, advocacy and sharing my story to help other people. I created #DISIRability to start this important discussion of sexual health and sex positivity for people with disabilities. As people with disabilities, we have the same basic needs as everyone else. We desire intimacy and connection. We are desirable.

I have now been providing sexual health education and sharing my personal story for the past two years at local disability agencies and sexual health forums online and in person. I hope you will take the time to read my blogs. Most of them are about sexual health and disabilities. Others are on different topics I share about my life, such as family relationships and addictions. I look forward to connecting with you.