This post is the fifth part of my series, “Guidebook for Navigating New Chronic Illness or Disability.”
Read the previous parts here:
Part 1: You Realize You Can’t Work As Much or At All Anymore
Part 2: When You Need Emotional or Mental Health Help
Part 3: Getting What You Need From Your Doctors
Part 4: When Going Out Becomes Difficult
Sex and Other Intimacy
Before I got sick, I was inundated by a lifetime of heartwarming tales of heroic people overcoming the odds, and defeating pervasive disability and illness. The other tales about people becoming ill or disabled were about great suffering, and about healthy lives tragically cut short. Since getting sick, I’ve come to recognize that sharing just these types of stories has some terrible consequences; most well and able-bodied people are ill equipped to make sense of the more common and nuanced realities behind adjusting to new illness or disability.
The reality is that most of the time, most of us hang out in the big, bitter-sweet grey area between miracles and tragedy. Our big victories are often mundane- things like finally getting a prescription we’ve fought through months of bureaucracy to obtain, or re-learning how to do things that used to seem small, trivial and easy. Our trials are sometimes about heavy suffering and even death, but often our trials are more about finding how to enjoy our deeply changed lives.
New illness and disability can shake up everything we think we know about ourselves. It’s generally a slow, humbling, and deeply frustrating process, but sometimes I find it’s possible to find some freedom in the process. I hope that others can also find some joy in being able to start from scratch in defining who they are.
It never ceases to surprise me how deeply illness and disability can reshape one’s identity and sense of self. This change can shake up everything we know about our dreams, who we want to be, and what we like to do. Our sexuality is no exception. As much as we may want to, it’s not likely that we will still want and be able to do those things we liked and could do before illness or disability. I’ve written the following guidance for those who are still getting used to their illness or disability, whether they’re partnered or not, and whether they want to be sexual or not.
Listen to Your Gut
Just because you could do things in the past, liked certain things, or wanted to do them before, does not mean you “should” now. Learning what you can do now, like now, or want now is important. In a lot of ways, my recommendations for thinking about sex after disability or illness onset is the same as my advice for a person thinking about losing their virginity.
The most important advice about sexuality? You HAVE to try to listen to your gut. Figuring out what you want may be a slow and frustrating process, but it’s important. If you aren’t able to listen to your gut, and you still try to be sexual, it’s all too easy to hurt yourself emotionally and physically. You don’t owe anyone your sexuality. It may be tempting to be sexual if you are desperate to act “normal,” but I’d recommend checking with your gut to make sure that you really want sex, and not just the appearance of normalcy. It’s ok to take your time to figure out what you really want, even if you or a partner is impatient to know.
Remember that, if you take time or a lifetime off from being sexual, there are still lots of non-sexual ways to connect with other people, physically and emotionally. I’ll talk about some of those at the end of this post.
Also remember that you always have the right to stop, change, or entirely avoid sex. This is true whether the person asking for sex is a partner, a stranger, a caregiver, a family member, or anyone else. You don’t have to be sexual, no matter what anyone pressures for, no matter what has happened in the past, and whether you and/or a partner is turned on. Until you feel safe and comfortable stopping or modifying sexual activity once it’s started, it is probably a good idea to wait.
If you find you’re having trouble figuring out what you want, or if you’re having a hard time being nice to yourself about what you’re needing, it might be time to ask for help. My tips on where to look for help and why can be found here: When You Need Emotional or Mental Health Help.
Tragically, people with disabilities are often particularly vulnerable to sexual abuse. If you have someone in your life who is making you feel unsafe, or is failing to respect your sexual boundaries, please reach out for help if you can. This brochure, written for people with disabilities, includes a concise explanation of personal rights, how to identify sexual abuse, and what to do if you are sexually assaulted.
The US National Sexual Assault Hotline is 1-800-656-HOPE. They can help you to find local counseling or connect you with your area’s sexual assault program if necessary. The call is anonymous unless you choose to share information to identify yourself, and the number you call them from is not retained. All information you share will remain confidential, except under one specific circumstance: if you are under 18, reveal identifying information, and also talk about being sexually assaulted.
Between porn, other media, and peer pressure, our society throws lots of ideas at us about what it means to be sexual, and these ideas can be very different from what we want and are able to do. This disconnect can grow even bigger as we adjust to lives as newly disabled or chronically ill people. I know that I’ve already devoted a whole section to this, but it’s central enough to repeat: figuring out how to listen to your gut will make this adjustment much easier and healthier.
If it’s time for you to start thinking about being sexual with your new body, a good way to start may be to Google the name of your most limiting condition or injury, along with the word sex. Please do use caution with this approach, as it might yield troubling results, including fetishization or mockeries of your condition. This risk varies from condition to condition; for instance, I have found nothing but good info when searching “CFS and sex.” Alternately, this masterpost has information about sexuality with a number of different conditions. If you’re ok clicking through some tiresome ads, http://sexuality.about.com/od/sex_and_disability/ is a great resource, and you can click through to a number of articles that relate to different concerns you might have. For my readers who have fatigue, I recommend reading http://sexuality.about.com/od/sex_and_disability/a/Sexual-Activities-For-Fatigue.htm.
This article is a wonderful resource about barriers and strategies for finding ways to be sexual if you are struggling with physical limitations. Some of the information overlaps with information in this post, but each post offers a lot the other doesn’t; if you are interested in the topic, I’d recommend reading both.
Your body is adjusting to a major change. Try to remember that is not likely that you’ll be able to do what you may have done before, but that if you’re patient and creative, there is a good chance you will discover new things to like. New positions, toys, pillows/bolsters and other supports, might help you figure out how to be comfortable as you explore your new limitations, abilities, and pleasure responses. There are a number of articles and books available about this process. This site is a good collection of links, including instructions on how to choose or even adapt toys for different disabilities, and one of these articles even talks about how to consider a need for privacy when selecting toys.
It takes time to learn about your new body, limitations, abilities, desires, and pleasures. In addition to being time-consuming, this process can also be filled with frustration. Please try to be patient and compassionate with yourself throughout this process. If anyone else is critical and impatient about your process, do your very best not to internalize what they are saying. You are doing what you can and want to, when you can and want to, and you don’t owe anything else to anyone. Remember that it’s fine to step away from exploring your sexuality, until you’re ready to try again. Your breaks could last hours, days, weeks, or years, but hopefully someday you will be able to come back and find some new ways to be fulfilled.
There are definite advantages to solo exploration, if you are able to explore your new body on your own. This kind of exploration can help you get in touch with what your gut is saying, outside of any outside pressures or the need to communicate with others along the way. Obviously, not everyone has the option of solo play, though. I know it’s controversial, but some readers might consider the idea of working with a sex surrogate if their limitations make self-exploration impossible.
Over time, try to reset your expectations, and those of your partners if you have any. When your body has new limitations, it is more important than ever to communicate with any and all partners about what will make you most comfortable and fulfilled. If you aren’t accustomed to speaking up about what you want and like sexually, or asking for modifications to sexual activity you are involved in, starting to communicate tactfully and effectively can be overwhelming. Individual therapists, sex therapists and couples counselors all might help you to learn how to do this without killing a sexual mood. In fact, many people find that once they are comfortable with it, more open communication can make their sex lives sexier and easier to navigate.
If you are partnered, sometimes, the other struggles related to your condition can make it feel important to be “normal in bed.” I would caution against thinking in those terms- when you do, the pressure and self-blame involved in hitting up against your limits can be damaging, and put you way out of touch with what your gut has to say. Hopefully you can instead foster enough self-compassion and patience with your process to find some happy ways to receive and give pleasure.
If you don’t have any sexual partners, hopefully you can tap into the fun of exploring sexuality while single. If you are also looking for others to date, I hope you can take your time with your search. Many people have to be patient before finding good, worthy, and respectful matches. Nobody I know has used this service, but there is at least one dating site specifically for people with disabilities to meet other disabled people, or to meet able-bodied people who are especially “positive about disabled” people: http://disableddating4u.us/
To thrive, most of us need meaningful social connection, at least sometimes. If you can’t, don’t want to, or aren’t ready to be sexual with others, remember that there are endless ways to non-sexually connect with other people. This list of non-sexual intimacies (do read all five parts!) may be helpful as you think about how to deepen or maintain your connections with other people, especially if you are not currently sexual. Googling “romantic date ideas” might also be a good way to collect ideas. I personally enjoyed the ideas listed in this Tumblr post, on suggestions for low-key indoor dates which might be doable for those with many chronic illnesses.
I wish all my readers luck in finding their ways to lives filled with intimacy and sexual fulfillment.
2 thoughts on “Guidebook for Navigating New Chronic Illness or Disability: Part 5 Sex and Other Intimacy”
I recently attended the first session in a 6 part series on learning to live with chronic conditions. Even though it was developed by researchers at Stanford and much of the practical advice was good, the tone and framing was offensive and harmful. I was so upset by the workshop book that I’m annotating it with several other people with plans to send it back to the program designers! It was a joy to find your series, which covers much of the same ground in a much more helpful way.
What a gratifying response! Sorry to hear about that course, but I’m so glad to hear you’re on top of a project to give feedback for the offending writers. I appreciate your feedback, and I would welcome you to suggest topics for future Guidebook installments, if there’s anything that would be particularly helpful. Have a great day.