Sexuality is an important contributor to quality of life in many patients with chronic illness that needs attention. Similarly, sexual education should not be neglected in children with mito. Sexuality is part of who we are and how we relate to others, but more specifically, encompasses how we share intimacy and love with another person, often a lifelong soulmate. Knowledge of sexuality, a healthy self-esteem, and adaptations made in sexual relationships all play an important role in a healthy sex life. Maintaining healthy sexuality, despite the demands of mito, will take some work and good communication, but is a goal well worth the effort.
People living with mitochondrial disease face challenges and barriers to rewarding sexual relationships:
- Issues of self-worth, made more difficult by the media and society’s views of a disability
- Pressures for perfection felt more intensely in those with losses
- Physical disabilities, including the presence of feeding tubes and catheters, surgical scars, and
mental confusion, add to body image disturbances and can make intimacy feel awkward
- Low self-esteem or struggle for sexual self-esteem
- Feelings of dependency relating to the mitochondrial illness
- Pain in certain positions or with movement
- Fatigue, nausea, and other mito symptoms can become a barrier to intimacy
- Energy – lack of energy for sex dramatically decrease libido.
- Medications may also decrease libido.
- The American Association of Sexuality Educators, Counselors, and Therapist state that many
have a reactive loss of interest in intimacy often due to the trauma of the diagnosis and resulting
anxiety and depression.
Steps to Positive Intimacy
A positive body image is an important part of self-esteem and having a healthy self-esteem is vital to establishing intimacy with others.
- Know your body, how it functions, and be comfortable with your body as it is.
- Validate yourself both for past accomplishments and for present effort.
- Be aware of negative thoughts about your self-esteem as those thought may take on a life of their
own to hurt relationships.
- Realize that those with mito can be sexy/be a sexual person.
- Talk to people with similar problems and/or support group
- Share feelings and receive support and validation.
- Consult books, videos and films for information may be helpful: The Four T’s: Time, Trust, Trying
and Talk (Maura).
- Communicate with your partner about needs and adjustments needed for intimacy and pleasure.
- Physical pain, cramping, muscular weakness, or fatigue may interfere with sensual bodily
sensations and sexual activities when you are living with mitochondrial disease. Being open to
alternative therapies and techniques to relax and lessen your body’s physical stress may be
Improving Physical Pleasure
- Hot baths, or time in a whirlpool or Jacuzzi
- Dance is one way to connect with your partner in an intimate way
- Massage with scented oils or lotion
- Aromatherapy before the sexual activity
- Focus on the process, not on the outcome, of the sex act itself
- Talk about what does and does not work, and what does and does not feel good.
- Communicate feelings, fears, past experiences and current expectations.
- Foreplay may be a substitute for, not merely an adjunct to, intercourse itself
- Realize that even foreplay may be limited due to fatigue
- Use alternate positions for intercourse as necessary due to pain, muscle cramping or weakness
- Try different positions to accommodate various tubes or infusion lines
Sexual arousal and physical pleasure can be affected by many things, including stress, loss of sensation, low self-esteem, chronic pain, and drug use. Increase the environment of sexual intimacy by:
- Sensitive touch to the whole body
- Merely holding each other
- Use of scented candles
- A warming fire
- A romantic meal
- Moving music
- Sharing any activity that is kept just between partners/spouses
Suggestions for men who have difficulty attaining an erection:
- Viagra, testosterone and other similar medications
- Hand-held vacuum pumps,
- Ejection therapy
- Penile implants
- Stop smoking and limit alcohol
- Medication review to assess medication impact on sexual function
- Discuss options with primary care or urology staff
Suggestions for women:
- Viagra is known to be an option
- Commercial warming lubricants such as KY
- Medications can help with vaginal dryness and atrophy
- Medication review to assess impact on sexual function
- Stop smoking and limit alcohol
- Discuss options with primary care or GYN staff
For both men and women, realize that having an orgasm is not essential to sharing a warm loving relationship with a partner. Being open to experimenting with a variety of postures and techniques can make sexual activities rewarding and keep intimacy as an important and healthy part of life.
Talking about healthy sexuality with your partner and your medical team will aid in find that path to a health sexuality.