Navigating the Holidays
Holiday time is often family time. Even for healthy folks, family gatherings can be emotionally challenging. For Sjogren’s patients, the holidays can be a minefield. We need to set clear limits, without apology, to protect our health. Many of us deal with insensitive comments or unreasonable demands when we feel most in need of understanding and support. Check out the article that I wrote on this topic for a Moisture Seekers newsletter in 2014. http://www.sjogrens.org/files/tms/TMS2014-Nov-Dec.pdf
In addition to the suggestions in the article, I would like share my current go-to response to insensitive comments, illustrated by this true story:
A friendly acquaintance gave me unsolicited advice about a diet that was sure to make me well.
My response: “That’s interesting. Why don’t you tell me what you know about Sjogren’s?”
This stopped him dead in his tracks. He admitted that he had no idea what Sjogren’s was.
In this case, the encounter did not warrant further effort. When the relationship is important to me or the person expresses a genuine interest, I suggest they read the Fast Facts page on this website and explore www.sjogrens.org
What’s up next for Sjogrens Advocate? I plan to write about the needs of newly diagnosed patients, including the importance of establishing ongoing care with a core health care team.
Patients: Please send feedback to me via the Contact Form on these two items:
1. What do you wish that you knew early on about getting good care?
2. I want to hear how the prototype form works in real life before I create a printable form. To try it out, simply use it as an outline to organize your history for your next medical visit. Tell me how it works!