The September Virtual Education Session, Scleroderma and Intimacy, covered an important topic that is often overlooked or avoided.

Our guest speaker was Chantelle Otten, a Melbourne-based Psycho-Sexologist passionate about empowering people to feel great about their sexuality. She hopes that by normalising talk about sex, pleasure and relationships, we break down barriers, and these important conversations will no longer be considered shameful or taboo.

With a background in scientific research, sexual medicine, and counselling, Chantelle believes that sexuality and self-esteem are an integral part of life to which everyone is entitled. Chantelle joined us to discuss intimacy when living with a chronic condition like scleroderma. Attendees had the opportunity to email questions before the presentation, which Chantelle answered throughout the presentation.

Exploring other opportunities to be intimate

Chantelle prompted participants to think about what sex means to them. We’ve been conditioned through tv, media and pornography that sex is goal orientated. That sex should only focus on intercourse when fulfilment can be achieved in various ways, including outercourse activities.

She spoke of challenging preconceived ideas on how sex ‘should’ look to focus on intimacy, respect, and connection rather than solely on sex. The caring touch of intimate contact and exploration of self and each other through outercourse activities such as massage, snuggling, petting and kissing can be as fulfilling as penetrative sex.

An example of an outercourse activity Changelle recommended is orgasmic meditation. Orgasmic meditation draws on mindfulness practices to intensify pleasure while in a semi-hypnotic state. When in this state, you can try different techniques, such as edging.  Edging is the practice of not rushing to have an orgasm. You build your orgasm by playing with yourself or having someone else play with you to increase your pleasure gradually. Just as you are about to orgasm, you decrease the stimulation. You continue increasing and decreasing pleasure levels until you are ready to climax. The delayed pleasure can lead to a heightened orgasm. Chantelle recommended attendees explore the work of Madison James.

Body awareness, confidence and intimacy when living with scleroderma

Living with scleroderma can cause concerns around appearance and contribute to feelings of lower self-esteem and lead to depression. Chronic pain and fatigue may also add extra complexity to intimate relationships. Chantelle suggested talking with a trusted source to discuss any challenges or concerns you may have. That can be your partner, doctor, specialist or psychiatrist, sexual health practitioner or sexologist like Chantelle. Our guide on Scleroderma and Intimacy is a valuable resource that you may find helpful to start the discussion.

Having open, honest conversations can present wonderful opportunities to be more open with your partner and explore intimacy together. And a bonus is that orgasm can act as a natural analgesic and help reduce pain and release endorphins, increasing feelings of happiness and self-worth.

Practical tips to help with intimacy when in pain

Chantelle suggested easy solutions such as using aids—as simple as using pillows to achieve a comfortable position—to purpose-made mobility aids and tools. You can also use toys to increase pleasure and replicate sexual acts that may otherwise be unachievable. Chantelle suggested other practical tips to help improve sexual outcomes:

  • scheduling sexual playtime when you know your pain will be reduced
  • having a warm bath with Epsom salts or magnesium flakes to relax muscles
  • taking pain relief or working with your specialist on measures to counter fatigue.

After answering pre-submitted questions, Chantelle left the group with a reminder that sex is messy and can be challenging, so above all:

“Just be kind to yourself, and make sure you have a partner that’s also going to be kind…or come see a sexologist like me.”