One of the most common problems I see in my sex therapy practice is people facing concerns about chronic illness and sex. Chronic illness is defined as an illness that lasts longer than 3 months and according to the National Health Council (2018), chronic illness affects approximately 133 million people in the United States (which represents 40% of the population) and is projected to rise to 157 million, with 81 million people having multiple conditions.
I myself struggle with a couple chronic illnesses. I had a back injury in 2011 that lead to a serious back surgery and while I am much improved, I still struggle with various pain and maintenance associated with the injury. I also have polycystic ovary syndrome and some signs of adenomyosis (a condition when endometrial tissue, which normally lines the uterus, exists within and grows into the muscular wall of the uterus) and possibly endometriosis. This leads to insulin resistance and a variety of other hormonal conditions, including hormonal mood issues, pain, acne, hair growth, and the list goes on and on. I have found at times I am greatly impacted by the relationship between chronic illness and sex in my life.
So, while I don’t really identify myself as such, I suppose I am a person living and dealing with chronic illness. And I can tell you, from my own personal and professional experience, chronic illness has a GREAT effect on sex, sexuality, and our own sexual self-image.
But it isn’t entirely hopeless- you can do things to ameliorate the effects that a chronic illness has on your sexual self love, identity, and behavior. And that is where I come in: as an AASECT Certified Sex Therapist with specialized training in dealing with chronic illness and sex AND someone who knows it first hand, I can help you and your partner(s) cope and thrive sexually despite and in spite of a chronic illness or illnesses. Understanding and awareness is the first step for change- I can help you understand your chronic illness and how it affects your sexual self-identity, sexual arousal, sexual desire, libido, and sexual expression.
While we don’t really have the time and space to deal with the full complexities of chronic illness and sex in a blog, there are a few things that I want to point out that can help you get started on the path to sexual health and wellness around chronic illness and sex. For more in depth information, please use the form below to contact me and set up an appointment.
The Diagnosis Itself
There are chronic illnesses and injuries out there that have a direct impact on sexual functioning- meaning, one of the direct effects of the diagnosis of a chronic illness is on your sexuality, sexual identity, and sexual arousal and desire. For example, hormonal issues or prostate cancer can directly affect your sexual system, as well as chronic urinary tract infections or a heart condition where you have to keep your heart rate down and since sexual arousal leads to increased heart rate, this would have a direct impact on your sexual life.
Other chronic illnesses, like fibromyalgia or chronic pain, may have more of an indirect or systemic impact on our sexual systems- meaning while these issues don’t directly affect our sexual health systems physiologically, the diagnosis of the illness itself might greatly impact us sexually through our other systems, such as psychologically, emotionally, mentally, or in other ways, like increased fatigue due to pain leads to less energy for sexual experiences which leads to less desire. Or having to miss work because of chronic illness, leads to lower self-esteem because one can’t work, which leads to less desire because in general the person is feeling bad about themselves.
It’s important to do your research about how your specific chronic illness affects sex and sexuality. And while the internet is a wealth of information, what we read on WebMD and other medical based sites don’t often give you the complete picture. My suggestion is to talk to your health care team- and if you don’t trust them, get a new team or bring on more members of the team. Take a look at what various Facebook groups, Reddit forums, and other bloggers and folks on the internet are saying. Read articles and watch youtube.com videos about what people are saying. Don’t form your opinion from just one source, form your opinion from a multitude of sources and second and third opinions. And remember, no one knows your health better than you do. And this includes your sexual health.
Medical and Health Trauma
One of the biggest factors in dealing with the relationship between chronic illness and sex is medical and health trauma, both for the person with the chronic illness and the partner(s) and family members. Medical and health issues- their diagnosis, treatment, and if no treatment available or accessible, their acceptance, can be riddled with traumatic experiences. Our culture idolizes western medicine to a point where we often put our blind trust into our health care system to care for us. But for many of us with chronic illnesses, we have time and time again been let down by “modern” and “western” medicine, or even individual practitioners, clinics and doctors to a point where trauma is often a main area that needs to be treated and can be a huge contributing factor to chronic illness and sex.
Trauma, in and of itself, often regardless of where it came from, can greatly impact our sexual systems. And it is a curious phenomena in our culture, where often times we look to doctors for solutions to our health problems, including what we perceive as sexual health problems, when they don’t have a lot of answers, training, or understanding of sex and chronic medical conditions. So that in and of itself can be traumatic- going to the well and there is no water!
Some of the treatments, or lack of treatments, can also be super traumatic. Some of our interventions are very invasive and can cause fear, anxiety, panic, and just in general a lot of trauma. Our body is sacred and needs to be protected and when we submit it to painful and scary and anxiety producing diagnostic testing, surgeries, injections, infusions, etc. it can damage our relationship with our body, which can damage our relationship with our sexual sense of self too.
Medical and health-related trauma is real, and can greatly affect our sexual systems. It’s important that you support yourself throughout your diagnosis and treatment of a chronic illness- therapy can help and it is better to proactively address this through therapy than reactively once symptoms start creeping in. Remember- our sexual system is an excellent gauge of what is going on in our lives- listen to it. It might not be the problem, but rather a symptom of a problem.
Medications and Treatment
The first thing you want to understand is how the treatment for your chronic illness affects you. I don’t know how many times that clients will come to me with long-standing sexual concerns and a lot of times it can be boiled down to the medications, and not the illnesses themselves, that have be a large contributor to sexual issues. And I also can’t tell you how many times doctors have either omitted talking to their clients about the side effects of medications or assured their clients there are no sexual side effects, when there actually were. Another factor too- even though the research is important around medications, often times I don’t think pharmaceutical research accurately represents how our sexual excitation and inhibition systems are affected by medications. And I have also found that sexual concerns are put at a lower priority than the health issue itself- kind of a “deal with it” or “tough luck” attitude.
And when it comes to treatment for chronic illnesses affecting our sex drive and sex life, I’m not just talking about medication, it can sometimes be treatment or absence of medication that impacts it. For example, a painful injection treatment can greatly affect our sexual systems or in my experience, removing hormonal birth control or other medications can create hormonal imbalances and irregular bleeding which can affect how I feel about myself sexually and has affected desire or arousal. Or sometimes, there is a high level of desire, but due to treatment or medication or advice of your doctor, you aren’t able to have sex. Medication and treatments can greatly affect your sexual identity, sexual self esteem, the way you feel about yourself sexually, and your sexual desire, arousal, and ability to orgasm. If you aren’t sure about how your medication and treatments are affecting your sexual systems, ask your health care provider team and if you want to dive deeper or aren’t sure about what to do to minimize the effects of your medication, treatment, and healthcare issue on your sexual system, feel free to reach out and set up an appointment.