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"But you don't look sick! Can you have a normal relationship?"

Sexuality plays a big part in all our lives: young and old, sick and well, and should not be ignored when we are afflicted with mitochondrial disease. Similarly, sexual education should not be neglected in children who suffer from this disorder. Knowledge of sexuality, a healthy self-esteem and adaptations made in our sexual relationships all play an important role in how we carry out our sex lives.

Challenges to a rewarding sexual relationship in people living with mitochondrial disease:

  • Issues of self-worth, made more difficult by the media and society's views of a disability
  • Pressures for perfection felt more intensely
  • Physical disabilities, the presence of feeding tubes and catheters, surgical scars, and mental confusion
  • Low self-esteem or struggle for sexual self-esteem
  • Feelings of dependency relating to the mitochondrial illness

Kinsey Report on Sexuality, 1998

Steps to Positive Intimacy

A positive body image is an important part of self-esteem and having high self-esteem is vital to establishing intimacy with others.

  • Know how your body 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 that may be projected onto our friends or lover.
  • Realize that you can be a sexy and sexual person even if you are ill.
  • Talk to people with similar problems and/or support group.
  • Share your feelings and receive support and validation.
  • Consult books, videos and films for information may be helpful:, The Sexual Health Network.

The Four T's: Time, Trust, Trying and Talk (Mauro)

  • These are very important when having a sexual relationship when a disability.
  • Talk with your partner about your needs and adjustments for the sex act.
  • Physical pain, cramping, muscular weakness, or fatigue may interfere with sensual bodily sensations and sexual activities when you are living with mitochondrial disease. It helps to be open to alternative therapies and techniques to relax and lessen your body's physical stress.

Improving Physical Pleasure

  • Hot baths, or time in a whirlpool or Jacuzzi
  • Massage with scented oils or lotion
  • Aromatherapy before the sexual activity
  • Focus on the process, not on the outcome, of the sex act itself
  • 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:

  • Massage
  • Sensitive touch to the whole body
  • Merely holding each other
  • Use of scented candles
  • A warming fire
  • A romantic meal
  • Moving music

Suggestions for men who have difficulty attaining an erection:

  • Viagra
  • hand-held vacuum pumps,
  • ejection therapy
  • penile implants

Suggestions for women:

  • Viagra is also be an option
  • new device known as Eroc CTD helps in attaining an organism
  • Commercial warming lubricants such as KY

That said, it is important to realize that it is not essential to have an orgasm to share 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 it an important part of our lifestyle.

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crystalj74's picture



Wow...I really needed to see this. Thank you so much for addressing a sometimes difficult subject for us to ask about. My husband has MELAS and I don't want to lose that "closeness" with him as his disease is progressing. Thank you again.

beck7422's picture



How do you get a prescription for the Eroc CTD when your doctors won't talk about sexual dysfunction with you? Even my OBYGN refuses to talk about it. Ugh.