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.

References:

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.

The Real Rheumatoid Disease: You Mean It's Permanent?

Usually the pain and worry of rheumatoid disease (RD) is not a topic on my blog. In a change from positive strategies and ways to cope with chronic illness I'm going to talk about the worries that arise as we age with RD, based on my point of view as well as a few friends.

You can become discouraged with chronic disease. Even when you are doing everything right, enjoying life and being productive in ways that are important to you, you wake up every morning and RD is still there. That's why the groundhog is our symbol. 

Since this year's topic for RD Awareness Day on February 2 is The Real Rheumatoid Disease, here are some concerns expressed by women who have been dealing with it for a long time.

RD just never stops - it's as determined and persistent as the people who  live with it are. The day never comes when we can relax and feel on top of our health.

Polly's view

I think of Polly as my RA twin. We were diagnosed at the same age and have a lot in common. Here are some comments from her:

"Who knows when they're first diagnosed that Rheumatoid Disease (RD) is more than stiffness, an 'old persons disease' or claw-like fingers?" 

She says that people think you get RD when you're old, but it’s not always true. You get RD when you're young and you're in shock. I was upset lately when a doctor said to me "We don't see hands like yours anymore." 

A doctor told her, "Well you know you're 65 and you're going to get something..."  She told him that she's "had something" for half her life. Her plan is to switch doctors and find one less dismissive. Sometimes she gets tired of fighting it all.

Julie is a bit older

Julie says try being in your 70's!! She always has good advice, and is pleased that most of her doctors haven't given up on her and keep trying to help.

She feels that her long-time Internist is the most apprehensive at the same time as she appreciates his help. He's the person who has seen her going down-hill and sees all the records from other physicians.

I like her definition of old:
"I don't consider people in their 60's elderly. 
I have read that 65 to 75 is "Young" old
75 to 85 is "Old"
and 85+ is "Very" old."

She agrees with Polly that other diseases or conditions piggyback on the inflammation of the RA or the medications that we have taken.

Polly

Polly thinks we're not rewarding to our doctors anymore because as RD damage and effects start to pile up there isn’t much that can be done.  
  

Ally has complications

Ally worries about the healthcare system making life harder for those who have chronic or terminal illnesses. (She's making a statement here about COPD and Emphysema.) 

"It is just the opposite of good medicine for the patient, to increase stress, discomfort. Waiting for test results that take forever to be processed is not good medicine. They live out of a book and we live out of our bodies." 

She also sympathizes with doctors who have protocols on how many patients they must see in a day. She thinks that their constant running does not equate to good medicine

Jane

I just had my first lung scan.

"It's terrible when the doc is aware of a problem like crackles in your lungs but doesn't tell you !!! I am so tired of fighting for things now. I really feel like just giving in."

Back to me

We're no longer young and when we were diagnosed either the treatments were less effective or we could not tolerate them. It's good news that treatments are so much better, but there are still people around who can look back at "the old days" and who are worried about aging with RD. That's a topic where you don't see enough research. Clinical trials are notorious  for not including people over the age of 65, and also excluding those who have more than one health problem.

With the emphasis now on evidence based medicine that exclusion of the older age group is bound to create some doubts about the best treatment in the future.

In fact there have been studies showing that RD is treated less aggressively in older patients.

Bad as they may be, my bones are better than his bones

Custom apparel by Cathy Beattie

This post is part of a blog carnival with RAWarrior, Kelly Young. There are 13 contributors.

The Twitter hashtag for RD Awareness Day is #TheRealRD