Questions About Intimacy, Illness and Disability
It’s difficult to talk about sexuality and intimacy in our culture, let alone sexuality as relates to illness or disability, but we are still human, and a large part of being human is sexuality.
How To Stay In Your Body When Pain is Present?
I’ve had a lot of pain. There have been moments in my life where my body is screaming at me and the idea of sex or sexiness is the last thing I can possibly imagine. However, it is possible. The trick is to begin to question how your body stays your friend and how you stay friends with your body even when it’s sending you many different signals.
Before anything else, I believe it is important to give yourself space to grieve what caused the pain. Mourn what’s been lost. Allow yourself to work through some of the anger that comes up as a result of whatever may have caused this physical pain. Connect with yourself and allow yourself a chance to grieve before you even begin thinking about sex. Look at yourself in the mirror and begin to reacquaint yourself with your new body. Treat it like a new body — like a newborn. Have tenderness for yourself and for your new body. Find openness within yourself. There is a lot of work and healing to be done with yourself and, perhaps, even with a psychotherapist.
Once some of the internal work is in place, then you can more wholeheartedly turn your attention to your new body. This begins through experimentation. Even if it’s through something as small as touching your elbow or another part of the body that isn’t erogenous at all, just begin. Be open minded; what might have turned you on before could be entirely different in your new body. Start with what feels good or even simply what doesn’t feel bad. The important part is not how you do it but simply that you start.
This process is by no means easy, but I would say it is imperative to overall health. This process of staying in your body when pain is present often means revisiting your body and revisiting your relationship to your body and, in so doing, staying fluid and limber with your ideas of self, sexuality and sensuality.
Having Uncomfortable Conversations with Your Doctor
In the context of illness, uncomfortable conversations with medical providers are inevitable and deeply important. A great place to start is simply asking your provider, “Is it safe for me to have sex?” If you have a chronic illness, such as prostate cancer or anything else that affects your body and immune system, asking your provider is it is safe to have sex is a fair question and smart conversation.
You will need to be the person to bring up sexuality
If you are curious about your sex life, that likely means you need to talk. It is important to note that, as uncomfortable as it may be for you to bring up sexuality with your medical provider, it may be even more uncomfortable for them.
Even though you are the patient, the responsibility is going to fall largely on you to push conversation and questions about sexuality. The beginnings of this conversation may be inherently awkward, especially in light of things like disability and illness, but this does not make it any less important.
We need to have uncomfortable conversations with our doctors, partners, and ourselves in order to look closely at ourselves and ask ourselves questions about our changing roles, sexuality, sensuality, and what our new “normal” is.
Finding Assistance for Sex for Couples Who Have Disabilities
There are professionals who exist to help in this way. There is a sub-specialty within psychology of human sexuality and within human sexuality there are sex therapists. These are licensed psychotherapists who focus solely on intimate physical relationships. My advice would be to look together and find a sex therapist. Sex therapists undergo rigorous certification processes and are legitimate licensed therapists. They can help facilitate sexual encounters between couples who both have disabilities in a therapeutic, above board way that is consensual and safe.
Intimacy in Hospitals and Facilities
A “Do Not Disturb” sign is not allowed in most hospital facilities, but there are ways to facilitate intimacy. Talking with your nurse or care team is key here; clear communication is vital. Simply say “Hey, we would like some time to ourselves and we would like you to put a sign on the door for such and such period of time.” Leave it at that. If you have roommates, approach the matter in the same way with your roommates. If you find that there is a policy against that for one reason or another I would work to push against it. Healing is essential and intimacy is part of that process.
When asking for intimate considerations in a hospital, I would begin by simply broaching the subject with your nurse. Clear communication is key here. Oftentimes nurses want their patients to be happy and there is a willingness to fly under the radar and bend the rules if the relationship is in a place where either party knows the other’s best intentions are in mind. This is yet another reason to always seek to have a great relationship with your nurse in particular.
Caregiver to Sexual Partner and Back Again
The best way to move from the caregiver dynamic to a sexual connection is through communication. This may start out awkwardly, but that’s okay. Clear communication is vital here. Simply ask if the subject is open to discussion. Ask if you can open up the idea together and see how it goes. From there, if you both are consenting to the idea, simply allow things to unfold even if they unfold awkwardly. Test the waters. Find a lay of the land. Learn what is safe. From there, begin experimenting like with light touch in a non-erogenous part of the body. Do what feels good in terms of touching and stroking hair.
Move on to increasingly more intense and more erogenous activity but start with touch and remember to always check in and talk to reorient yourselves. Much of this will be trial and error and that’s okay. Sometimes this may be going to the sex shop and buying a new device, toy, or outfit. Be open to what you used to do prior to your new dynamic but also be open to new things within this new dynamic. Have a very open mind — what might constitute sexy now may be entirely different than what constituted sexy before and that is okay. What matters is what works for both of you and this is going to be found through a process of experimentation.
Finding a Partner for Someone with a Shortened Life Span
Ultimately, we would like to find a way to create a dating app for people who are terminally ill or have advanced illness. You’re not alone, as much as you may feel that way. There are many other people who feel exactly the same way you do or who would find you very desirable just as you are.
In the meantime, chat rooms and support groups that are specific to your condition have proven to be very helpful. These support groups can be a way to begin to form relationships with other people in similar shoes.
Waiting rooms in the clinic are another way many people with shortened life spans meet long-term partners. I’ve met many people who have met in this exact way.
Dating apps are another powerful tool. If you are very upfront and honest about your diagnosis say, in your profile, it may scare some people off but it also could potentially draw that special someone.
Use the time that you’re alone to begin to connect to yourself again. Practice being in your body and being at peace with the changes taking place. That may be through erotic touch, masturbation and other things of this nature, but it could also be simply beginning to get back into your body by mindfulness practices. Reminding yourself that your body has all the potential to feel and connect to the world around you is a very powerful thing. Start with the sensuous and go from there; maybe get to the central and from there maybe to the sexual. Just take it one step at a time.
