Sexual health and well-being of young people with chronic conditions

EPF Youth Group - Sexual Health and Well-Being by Moira Tzitzika, PhDc

Sexuality and intimate relationships are a significant part of life and well-being for all of us. Romantic and sexual relationships play an important developmental role in emerging adulthood and of course sexual activity has a strong impact when it comes to determining a basic quality of life, self-esteem, self-image and quality of interpersonal relationships. The presence of a physical illness/chronic disease has the potential to complicate the lifelong course of sexual development and the ways in which one defines and expresses sexuality with sexual dysfunction or dissatisfaction being common, associated with increased anxiety and reduced quality of life.

  1. “Body confidence and self-esteem issues”. What advice would you give to young patient struggling with this, based on your expertise?

If you are a young adult who feels that your body or your image, due to chronic health issues is not so appealing as you would like, remember that body image and self-esteem start in the mind, not in the mirror. Body image is mental and emotional: it’s both the mental picture that you have of your body and the way you feel about your body when you look in a mirror. Healthy body image is more than simply tolerating what you look like or “not disliking” yourself. A healthy body image means that you truly accept and like the way you look right now, and aren’t trying to change your body to fit the way you think you should look. It means recognizing the individual qualities and strengths that make you feel good about yourself beyond weight, shape or appearance, and resisting the pressure to strive for the myth of the “perfect” body that you see in the media, online, in your communities. Self-esteem is how you value and respect yourself as a person—it is the opinion that you have of yourself inside and out. Self-esteem impacts how you take care of yourself, emotionally, physically, and spiritually. Self-esteem is about your whole self, not just your body. When you have good self-esteem, you value yourself, and you know that you deserve good care and respect—from yourself and from others. You can appreciate and celebrate your strengths and your abilities, and you don’t put yourself down because of a chronic health condition. Body image and self-esteem directly influence each other—and your feelings, thoughts, and behaviors. If you don’t like your body (or a part of your body), it’s hard to feel good about your whole self. The reverse is also true: if you don’t value yourself, it’s hard to notice the good things and give your body the respect it deserves.

When you have a poor body image, this leads to an overall low sexual self-esteem. Usually, the result, then, is a low sex drive. In order to surpass all these you have the opportunity to look at what barriers may be keeping you stuck.

NEGATIVE SELF-TALK. One of those may be your head. Your brain is the biggest sex organ you have because it allows you to engage in self-talk, primarily negative self-talk! Negative self-talk can be very big for us, and one of the things you may be telling yourself is your relation to sex and intimacy. If most of your talk around that is negative, it can have a huge impact on yourself, even when it comes to sexual experience and overall sex drive. It’s hard to be sexual if your head gets in the way and you have too much chatter up there. It’s going to be really hard for you to focus and be present at the moment with a partner, or if you’re flying solo, your head, and your brain, that negative self-talk can be a huge barrier.

CONSTANTLY COMPARING. Another barrier that builds on negative self-talk is comparison. When you hear friends chatting about how great their sex lives are, you start to have thoughts like, “What’s wrong with me?”. Asking yourself this can ruminate and cycle, which keeps you stuck.


REFRAME + RID COMPARISONS. The first thing to do is rebuild your sense of sexual self-esteem. To do this, stop the comparison game. If you see a woman or man with a body you wish to have online or in-person and start thinking about how undesirable you must be to your partner…stop that thought immediately. Instead, list the times your current partner or past partner complimented your body and something about you that got them going.

KNOW YOUR NEEDS. Another tip to improve your sexual self-esteem is to know your needs. Of course, your sexual needs but in every area of your life too–friendship needs, health/medical needs, relationship needs, and family needs. What might happen is when you look at this and start exploring it, you may surprise yourself with what you realize.

I don’t know how often you stop to look at all these different areas of your life, but it will be beneficial to get in touch with what you need. For this tip, take time to explore these areas by either writing them down or taking them out. It will help you get in touch with your actual sexual and intimacy needs.

TALK WITH YOUR PARTNER. One way to alleviate the stress of wondering if you’re doing enough in the bedroom or being enough is opening the dialogue up with your partner about sex. Once you know what your sexual needs are, guide your partner into how to please you best. Maybe you don’t feel as revved up after a long day and enjoy sex more in the morning. Maybe you don’t feel sexy after a busy day watching after the kids and feel better headspace on the weekends. Talking with your partner about when sex will be the most pleasurable will allow you to dispel any chance of feeling like you’re not “in the mood” enough.

Remember. You deserve to feel confident and worthy. So stop listening to the media or the taboos from the society, and start lifting your own voice. You are worthy, and you are enough.

  1. In your opinion, what do you think is the best time for a young patient to share that they have a chronic condition, which might affect their sex life with their potential partner? what advice would you give to a young patient in such a delicate situation?

Usually when we have a new partner, we want to know everything about him or her. But is that always the case?

 Imagine that you are having a first date with someone you like a lot. And he or she starts talking about all of his or her problems and issues regarding health, phobias, dislikes etc. Does this sound interesting to you? Do we really want to know everything from the first date? Probably not. We have to remember that a chronic disease is a part of life but not all of it. We have a lot of other things to show and discuss. For most of us first dates don’t require show-and-tell. This can happen over time. Remember that the best time to reveal to someone a chronic health condition is the time that you would like to know something similar from the other. But you should have in mind that half-truths lay a shaky foundation in relationships. For some people, risk is easier to be taken up front before getting hurt. Whether you choose to reveal your condition early or not you have to accept the fact that some people will be frightened off and others will not. But, in every case if that person is worth pursuing then it’s worth telling.

  1. Do you have any information or data about the link between chronic disease (CD) that affect sexual activities and acquired sexual disfunctions?

To understand the impact of CD on sexuality and of sexuality during chronicity, we have to make among others, the following observations: 1) Sexual function is assessed according to a response accepted as 'normal' under standards of performance within the expected response cycle. 2) Sexual wellbeing is an individual and subjective experience of sexuality that depends on how it is evaluated within the context of individual and social life. 3) Sexual dysfunction and sexual problems can occur at the same time, but happen separately, and 4) Sexual intimacy is an important way of communicating with the partner. Understanding human sexuality as a quality-of-life component of individuals with CD is quite important. If we want to estimate the relationship between CD and sexuality we must bear in mind the person’s age, health condition, progress of the CD, and type of disability, given that by being sudden it requires immediate adaptation to the situation, but a progressive CD requires continuous adaptation to limitations generated by the disease. In this sense, the impact has to do with the moment in life the CD appears, so that if the individuals are not sexually active, they generally learn to live with the limitation characteristic of CD, unlike those who are sexually active because they must adapt to an additional loss. Chronic disease can have a psychological effect on patients or their partners, affecting self-image and self-esteem, it may alter the bodily image due to negative changes in appearance, or due to loss of functionality; this leads to a negative self-perception in the sense of being less attractive and, eventually, to rejecting sexual activity. 

Effects of chronic illness on sexuality

Chronic illness can have profound negative effects on relationship and sexual satisfaction of both patients and partners. The effects of chronic illness on sexuality are multifactorial and can impact on all phases of sexual response. Effects can also be classified into biopsychosocial categories.

Sexual dysfunction associated with chronic illness

Reduced sexual desire

Impaired sexual arousal: Erectile dysfunction in men, lack of lubrication or dryness and coital discomfort in women, lack of subjective pleasure.

Orgasmic dysfunction: Delayed ejaculation or anorgasmia in men, difficulty reaching orgasm or anorgasmia in women, alteration in orgasmic intensity.

Painful intercourse, including vaginismus and sexual aversion

Biological effects: Sexual desire, capacity and activity may be altered by illness through interference with the hormonal, vascular and neural integrity of the genitalia, as well as the effects and side effects of medications.

Psychological effects: Anxiety, loss of self-esteem, grief and depression associated with chronic illness can impair sexual fulfilment. While some couples easily accept limitation or cessation of sexual activity caused by chronic illness, for others alteration of sexual function or unsatisfactory sexual relations can precipitate a significant emotional crisis.

About Moira Tzitzika

Moira Tzitzika is a psychologist, psychosexologist certified from the European Society of Sexual Medicine. Her special scientific interests are chronic diseases and disability. She has published a lot of articles regarding the sexuality of people with Multiple Sclerosis, Cerebral Palsy and Spinal Cord Injury. Moira is also working with Panteion University in Athens regarding sexual education in pupils with or without disability.