Thursday, December 11, 2014

The Moisture Seekers: How to Talk With Your Family about Sjogren's

Geez, Julia. There's no need to shout....

Earlier this year I was asked by Dr. Sarah Schafer to collaborate in writing an article for the Sjogren's Syndrome Foundation publication "The Moisture Seekers". It appears in the November/December 2014 and is available for SSF members to view online. Members also receive printed copies in the mail. Collaborating with Dr. Schafer, physician and Sjogren's syndrome patient, as well as Dr. Teri Rumph, author of The Sjogren's Syndrome Survival Guide was such a great experience! I'm glad that I was able to contribute.

I thought Sarah was spot-on in her discussion about communication with loved ones about chronic illness and her action points are applicable to any long term illness. I've posted a segment here, but SSF members can download a PDF copy of their very own here. Here's an excerpt:

How to Talk With Your Family about Sjögren’s
by Sarah Schafer, MD and Sjögren’s Patient
Special acknowledgment to Teri Rumpf, PhD and Julia Oleinik, RN for their contributions to this article.

There is a growing body of evidence that rich social support networks are important to overall health, immune function and healing. They improve quality of life and facilitate coping with chronic illness. Conversely, negative social interac- tions create a stress response that have the opposite effect. Support from family members and close friends can be one of the most important resources for you to draw on when dealing with Sjögren’s. Skillful communication about your illness is key to nourishing the relationships that matter the most to you. This article only attempts to skim the surface of this complex topic.
continued page 8  

This is a difficult topic for many of us, especially those that struggle with family and friends that simply don't -- or won't -- understand the challenges that accompany this disease. It's hard to begin this conversation without sounding as though we are complaining or accusing. Despite the awkwardness that is inevitable when beginning one of these discussions, it's vital to begin this type of dialogue both for you and for your loved ones.

I've written before about difficulties with relationships once chronic illness enters the picture, read this. The post was written way back in 2010 but continues to be actively commented upon, with several excellent observations made. Like this one by connielea:
Well I have lost friends who don't know how to laugh with you when you tell them how you yarked in the shower that morning because of your illness. Some people are just squemish and can't laugh at ick factor that comes with a chronic illness. And they don't get the "chronic" part. The up's and down's are more than they signed up for in the friend dept. I always love the "you don't look sick" part. A real friend knows how long it took you to "not look sick" on the days when you venture out in public. My real friends can look at me an know if I am having a good day or a bad day and stick with me for both. Friends, we need them and we need to be them.
And this:
Abigail.R said...
I've been browsing through several articles on this topic and this was a good one, thanks :)
The thing I find most frustrating is the fact my friends never seem to understand that I don't want to stay at home all the time either. It's hard not to get upset when they keep pestering me to go out and I hate to use my condition as an excuse. Fatigue is the hardest symptom because, unless you have suffered from it, I think people find it difficult to imagine tiredness to be so debilitating.
Here is a comment made by a friend, which provides another interesting perspective:
Anonymous said...
I'm a friend who did and does understand. I watched a co-worker go through working in misery, eventually becoming unemployed because of illness, floundering through the diagnosis nightmare, etc. I helped her get to MDs and specialists for testing, listened, let her needs drive the amount of activity we did, etc. When she got the Sjogren's Dx, I made a point of doing some research and learning what I could (I found this blog!).
I understand the depression and brain fog and frustration and depleted energy. But I did eventually burn out on the fact that all of our time together consisted of her ranting on and on and on about her health and her troubled life.  
Never asked how I was today. Never went out of her way to give ME a call when I was having some ups and downs. Never listened when I said that I really couldn't take her ranting about everything today, because I had already had a bad day myself. 
Finally decided I didn't need a one-way friendship, even if she had a valid reason to be in need of support. It hurt me to stop calling or seeing her, but I had no choice for my own sanity. 
Chronic Illness is a big challenge. It doesn't excuse wearing out your friend.
Here's more from The Moisture Seekers article which goes on to offer some concrete tools in effective communication:

Examples of useful responses and communication tools
  • If you are unsure of a person’s awareness or interest, you can ask: “I’m not sure how much you know about Sjögren’s- do you want to know more about what’s really going on with me?”
  • When someone asks if they can help, try to be ready with a specific request such as stopping by with dinner, running errands, childcare, etc. If you are caught off guard, a good response might be: “Can I get back to you? I could really use help but I am feel- ing too overwhelmed to think about it right now.”
  • State your limitations and needs, clearly and without apology. If you are too tired to cook, shop or clean, state that and request specific help from household members. For example: “I’m not well enough to do housework right now. Could you please vacuum and clean the bathrooms once a week?” as opposed to the more vague, “I need more help with the cleaning.”
  • Many people go into advice giving mode, offering instant remedies such as the latest diet, various medical regimens, healers etc. This may be moti- vated by a true desire to help, or it can be a way to distance themselves from your experience. Some possible responses: “Thanks for your concern, I am working closely with my doctor on this,” or “I ap- preciate your concern. I need to do this in my own way and in my own time. It would be great if you could support my choices.”
  • Dealing with insensitive and judgmental com- ments, especially if repeated, is difficult. One strategy is to provide the speaker with an opportunity to consider the hurtfulness of their comments, by asking: “Let me understand. Are you saying (repeat hurtful comment)?” The person may back pedal or give their comment more thought. This does not always work. 
 Here are examples of responses to real life comments:
  • If you just stopped taking all those medications, you would be fine.”
  • Response: “What I’m hearing you say is you think Sjögren’s is not serious enough to require medication.”
  • “If you would exercise/lose weight/eat paleo etc. you would be fine.”
  • Response: “Do you think if I (fill in the blank) my Sjögren’s will go away?”
  • To a more subtle comment insinuating you are not trying hard enough: “I’m hearing you say that if I tried harder that I could do _______ (fill in activity) and still manage my Sjögren’s symptoms.”
  • If responses like this do not work, set boundaries: “It hurts to hear you say this. I am doing my best. Please keep these comments to yourself.” 
Have you had experiences similar to these? Have you developed useful phrases when dealing with difficult people?

Let's keep the conversation going.


Christina said...

Yes I have experienced this but with family. And it was more about my food allergies that are overwhelming than the Sjogren's. Although during holidays its hard to cook ( I have to cook in order to eat, no take out or out to dinner for me) and my family never offers to help. And they make snarky comments like We don't like your food and we don't want to have you over cause its too hard. I don't ask anyone to accommodate me, I bring my own food. So I don't spend holidays with my birth family, just my kids and husband. Its sad.

Brigid said...

My sisters don't want to hear anything about Sjogren's - one even suggested that if I didn't think about it, I'd feel better! I realized that at least part of this is fear - if they do everything right, maintain healthy weight, exercise, eat the right foods, etc. they will never get sick. Since autoimmune disease hits out of the blue with the caveat that it's partially genetic, my diagnosis scares them.

Brigid said...

Also - since they never heard of Sjogren's, they are half convinced that I made it up and half convinced it's not so bad!