“Sexual energy is the primal and creative energy of the universe.” — Deepak Chopra
As someone who had a fairly healthy sex drive before falling on the ice and suffering a traumatic brain injury (TBI), I was confused as to what was going on with my libido.
It’s a story I hear far too often among TBI survivors — they want to be intimate with their partner, yet just don’t have the bandwidth to even consider it. The partner feels neglected and/or frustrated, and the survivor feels helpless and misunderstood. This cycle can continue for years, and I felt it was time to speak out on a topic that affects 2.5 million Americans each year, yet is rarely talked about: Sex After Brain Injury.
For the past few years I have had a “friends-with-benefits” situation with Tim (not his real name.) We enjoy each other’s company, and have a great sexual chemistry together. He lives about an hour west of the Twin Cities, so I see him only every few months, which works out perfectly for both of us.
I saw Tim several times in the first few months after my fall and it was, well, interesting. In addition to a TBI, I had also sustained whiplash, torn muscles, and a dislocated sternum. Finding a position for me to get comfortable in was challenging, to say the least. Tim was patient with me, and very gentle and kind. He understood my situation and wanted to do whatever he could to make it easier for me.
It was almost comical, the amount of work it took—propping me up on pillows so that I wouldn’t be dizzy, repositioning me every few minutes so that I wouldn’t be in pain, and let’s not forget that I couldn’t “jiggle” my head around or it would cause an instant headache.
After the first two visits, I simply wasn’t even interested in sex any more. Not because it took too much work, but because I just didn’t have the energy. I didn’t even have the desire to “make out,” and even just giving him a hug took everything I had. When Tim would stop by for a visit, I would basically sit on the couch in a zombie-like state while we talked about the weather. It was awkward, but he never made me feel bad, although I am sure he was disappointed.
His visits became less frequent, but we still talked often on the phone. Fortunately we had a good friendship, and the “benefits” were only part of the deal.
About two years after my fall, I was expecting a visit from Tim and was actually looking forward to it. I felt I was ready to give an afternoon romp another try. Alas, I had a killer headache when he showed up. He could tell just by looking at me — and hearing the difficulty I had speaking — that a romp just wasn’t going to happen.
I was so frustrated because I had actually psyched myself up enough to want to have sex again. It was the first time in almost two years that I had felt the need inside of me. I knew how good we were together in the bedroom, and wanted to experience that feeling of intimacy with him again.
He recently came to town again, and this time I was determined to make it happen. Finally, after two and a half years, Amy was ready for “sexy time” again. I still struggled with a bit of dizziness, but I powered through it and didn’t let it distract me. I reassured Tim that I was ready to try this or that, and we had a fun afternoon together. I had missed the feeling of intimacy, almost as much as I missed my memory and spunky personality.
While most of my physical injuries have healed, every inch of my body hurt the following day. It took me a few days to recover physically and restore my energy levels, but it was completely worth it — Amy got her groove back! Tim commented on the fact that he could tell my personality was returning to “normal” and was happy to see me feeling more energetic and lively.
While I am fortunate that my “friend with benefits” was compassionate and understanding, I completely get how relationships are turned upside by TBI. Not only is the person and his or her partner dealing with an invisible injury, the partner is also getting frustrated with what is and isn’t happening in the bedroom. While the person may be physically back to normal, she or he is still dealing with a lot of the invisible symptoms of TBI.
From my experience, I’ve learned that five main areas of my TBI were holding my body back from having a sex drive:
1.) Neuro Fatigue.Our energy levels are severely limited after a brain injury. Every single thing we do throughout the day requires energy. Whether it’s brushing our teeth, reading emails, going for a walk, or washing the dishes, we are taking energy from our reserves. We are easily tired, and I know that I sleep 10 hours at night, and still require a 2-hour nap during the afternoon. The thought of trying to add sex into my daily routine was daunting, and I’m sure if I had a spouse or partner, he would have been frustrated. However, it is important for the partner to understand that it’s not him (or her)—it has absolutely nothing to do with him—and it could take a long time to get our energy levels and stamina back. It took me two and a half years to be ready to participate in a single afternoon of lovemaking.
2.) Dizzy and Balance Issues.Many brain injury survivors suffer from being dizzy and having balance disorders. In the early days after my TBI, I couldn’t lie flat on my back, nor could I bend over without practically passing out. While one can try a lot of positions in the bedroom, almost all of them caused some degree of dizziness. Circle back to my first point about neuro fatigue, and combine the already-tired brain with some dizziness, and that’s a recipe for disaster.
3.) Chronic Pain.Not all brain injury survivors will have physical injuries, but I did. Even two and a half years later, I still deal with a lot of chronic pain. In the bedroom it hurt my chest, neck, and shoulders to be on the top, bottom, or anywhere in between. Again, think of neuro fatigue, coupled with chronic pain… are you starting to get the picture?
4.) Having a total lack of interest in anything—not just sex—is one of the most common side effects of a brain injury. I remember my personality being “flat” for the first two years, and wondering if I would ever laugh again, or want to do any of my hobbies again. I can’t say it too often: every single thing we do takes energy. I think our brains instinctively try to preserve as much energy as possible, and having an interest in something is a low priority. I remember not wanting to do pretty much anything. Laundry and cooking were horrific tasks, as was driving myself to my favorite store.
5.) Let’s be real: sex involves a LOT of stimulation. Even a healthy, active person without a brain injury can readily admit that sex engages pretty much every one of our senses to an extreme. Our brains are already running on conserved energy. I remember worrying that I was going to stroke-out the first time I had sex after my TBI. My heart was racing out of control, my head was pounding, I was dizzy, my entire body hurt, and all the while I was trying to make sure my partner wasn’t aware of the hell going on inside my head. Even going out to eat at a loud and people-filled restaurant is a major undertaking with all the background noise and lights and people talking. Is there any wonder that having sex is just too much for our brains?
I hope that having read this far, you are gaining a better understanding into the struggle of living with a brain injury. I hope…
If you are the survivor, you give yourself grace and know that you’re not alone in the journey.
If you’re the partner, you can have a better understanding of what the other person is going through. While I can’t even imagine how frustrating this has to be for you, it’s 10 times more frustrating for the survivor.
While I know I got my sexual groove back, it’s going to be different for every single person. It’s important for both of you to be patient and understanding, and for the partner to be compassionate and empathetic. And most importantly for both of you…just enjoy being there with your loved one.
Amy Zellmer is an award-winning author, speaker, and advocate of traumatic brain injury (TBI). She is a frequent contributor to the Huffington Post, and has created a privateFacebook group for survivors and also produces a podcast series. She sits on the Brain Injury Association of America’sAdvisory Council (BIAAAC) and is involved with the Minnesota Brain Injury Alliance. She travels the country with her Yorkie, Pixxie, to help raise awareness about this silent and invisible injury that affects over 2.5 million Americans each year.
In November, 2015 she released her first book, “Life With a Traumatic Brain Injury: Finding the Road Back to Normal”which received a silver award at the Midwest Book Awards in May, 2016. Her second book, “Surviving Brain Injury: Stories of Strength and Inspiration” is a collection of stories written by brain injury survivors and caregivers and will be released November 2016. for more information: www.facesoftbi.com
Originally Published on Huffington Post
Photo credit: Getty Images