Wednesday, 17 February 2016

Intimacy, Sexuality and Sjogren's Syndrome. Sjogren's National Conference 2015

In comments and feedback to the Sjogren's Society of Canada members have indicated a wish to hear more about a topic that is usually kept in the closet - intimacy. In 2015 we had a great speaker who gave us useful information about intimacy and sexuality.

Many of us have brought this issue up during doctor visits and have found that many health care providers seem to be uncomfortable with this topic and do not offer much advice. 

Since this is so crucial to maintaining our relationships, we were happy to hear Iris Zink, a Rheumatology Nurse Practitioner and President of the Rheumatology Nurses Society, speak on the topic of "Intimacy, Sexuality and Sjogren's Syndrome." Her advice sounded excellent for people with any chronic disease.

Normally she lectures to audiences of health care professionals across the United States. In her role at the Beals Institute she is known as "the sex lady" and I think we may have been her first audience of patients.

I elect Iris Zink as our most memorable and original speaker ever. 

When I first noticed her in the room on the morning of the Conference I wondered about her red and silver boots but I had no idea that underneath her ordinary white jacket she was wearing a Wonder Woman cape.

  Note the pointer in Iris's right hand

Her no-nonsense talk was straightforward and clear - we can't keep treating Intimacy and sexuality as the elephant in the room. Embarrassment on the part of the patient and healthcare provider results in no discussion.

Elephant in the room

It was too bad her audience wasn't bigger. She got her message across in a very compelling way - so much so that if Iris wrote a book I would give copies away as a public service. Her lecture was helpful for patient and provider communication, as well as for patients and their spouses.

She told us that 66% of patients with hip and back Osteoarthritis, 62% with Rheumatoid Arthritis and 71% with Fibromyalgia have difficulties with sexual problems. 

She stressed that we should accept what we've got, and told us the brain is 90% of sex, the skin only 10%. Her presentation went over well with the mixed audience. 

The main issue is how we start the conversation and how we communicate with each other. For instance: Complete this sentence - "I miss ............." when you and your partner discuss intimacy. Talk, touch and practice. She defined sex as the ultimate union of the body and the mind.

Don't forget your Kegel exercises, men too. She suggested doing Kegels 30 minutes before sex to increase the blood flow to that part of the body. 

Her talk was optimistic and empowering. Most of the people in the room were smiling at the uninhibited style and the anecdotes and cartoons that drew us in. 

We were even given homework to do with our partners:
1. Talk to one another
2. Spend 30 minutes touching each other without intercourse or orgasm
3. If you are interested in steamy sex talk you have to practice.
4. Know your body and what makes you aroused
5. Date!!! Make it a priority!

All who wanted came home with catalogs so that we could have a look at some of the possible intimacy enhancing products.


Iris Zink wrote an article called "A Rheumatologic Perspective on Intimacy and Chronic Illness" for The Rheumatologist - an official publication of the American College of Rheumatology (ACR).

A study by Bitzer and Platano that Iris referenced concluded that "sexual problems are frequent in many clinical conditions, but are not yet a routine part of diagnostic workup and therapeutic planning." She mentioned that 40% of ObGyns don't ask about sexual function.

1 comment:

  1. She has been in fact the most memorable speaker I've ever heard. So many lessons learnt from her. Thanks for writing this up Annette :)