She has Sjögren’s
Positive Actions and Attitudes that can be Supportive to You Both
by Fred Fernandez, Member SSF Board of Directors
For everyone who is the spouse of a Sjögren’s syndrome patient, you completely understand that you both have an important role in managing the disease. Few things impact the life and activities of a marriage partnership like the unplanned complications of one of you being diagnosed with an incurable autoimmune disease. Just as with so many things in life, actions and attitudes are critical to outcomes and being in control. With Sjögren’s, 90% of the time it is she who has been diagnosed, but make no mistake about it, you both are now faced with learning to deal with the manifestations and what you can do together to keep your life and activities within the acceptable range of your goals as a couple. Each Sjögren’s patient is unique in how he or she may be impacted; however, there are many proven actions which have been shown to be immensely helpful in managing life towards normalcy, what ever that is!
When you find out, please be sure to let us all know! The single most important step a spouse of a Sjögren’s patient can take is addressing it together, focusing on the positive proactive steps that will make a difference in quality of life for her and you both! But just what does that mean, you ask? It is important that couples decide the answer to this question together and for them selves individually, as the best answers will be as diverse as the individuals involved and the varied ways relationships are constructed. Since my wife received the diagnosis over 25 years ago, we have engaged in numerous opportunities to learn about Sjögren’s and what we can do to manage it. We sought out the best information we could find from many sources and quickly discovered the Sjögren’s Syndrome Foundation to be the most helpful resource out there. As a result, we attended many of the national conferences, made use of the Foundation resources, and have become financial contributors in support of the mission to create awareness and fund research to find a cure.
This is a selfish activity we call “trying to help ourselves.” We also work on behalf of the Foundation by volunteering our energy and resources to raise research funds and co-chair the annual Atlanta Sip for Sjögren’s fine water tasting event. As I enter my second term as an active member of the SS Foundation board of directors, I have sought to be an integral part of the organization’s efforts to serve the patient community, to educate others, and to create greater awareness about this littleknown autoimmune disease. The knowledge we gained includes the importance of proper diet and avoiding foods which contribute to dehydration. We are very specific when ordering food in restaurants and only frequent those which are welcoming to our concern for customizing her food order. We prepare food more often at home where we are in complete control of the content and preparation. We have learned to recognize there are times when our best-made plans might be interrupted by fatigue which can weigh down many Sjögren’s patients. Since failing to heed the signs of fatigue only leads to greater exhaustion and weakening of her immune system, we are quick to respond with a change of plans and some needed down time rest. I look to do small things to help her with this and to insure we do not add even more emotional stress than she might already feel about not being up to doing more.
Another area of importance is to actively participate in addressing your knowledge of Sjögren’s by joining her at the doctor’s office for visits or attending educational programs like the Sjögren’s national or regional conferences or local support group events. Learning about the pathology and what is going on in her body as well as about the various treatments and medications will greatly increase your ability to be constructively helpful and will insure you understand what is going on with her overall health and how you can be supportive. Her best tool, and we recommend everyone do this, is to update her written account of how she is doing between doctor visits and provide this information to each of her doctors along with any questions she has. She always takes notes of each visit and has noticed this helps her to get more thorough responses from the doctors and helps them understand she is taking responsibility and control of her treatment. So what does addressing it together mean to you? Perhaps like us, it really is no different than what you would do for any other important issue in your life as a couple. Being a central part of the learning, participating actively, finding ways in which you each can help create the best possible outcome, making adjustments where needed and planning a life routine which allows you to maximize your success and enjoyment while maintaining the best possible control over her health. Or it might mean taking on a more active role of finding new solutions through supporting research by doing critical fundraising and volunteering your most important resource...Time.
Your positive actions and attitudes are two areas where as a couple, you have complete control. How well you use this power will help lead you to the best possible outcome. We wish you a successful path in your individual journeys as couples learning to take as much constructive control of Sjögren’s as possible.
This article was first printed in the Sjögren’s Syndrome Foundation’s newsletter, The Moisture Seekers, Vol. 29 Issue 1 January 2011. Please visit www.sjogrens.org to learn more Reprinted with permission from Sjögren’s Syndrome Foundation