Whether you consider your family as the family you were born or married into, the one you’ve created with your partner or spouse, or one you’ve hand-picked from close friends over the years, the strong support system these people provide in your life is as vital to your health and well-being as any medication that may be prescribed to treat your lupus.

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Contents

• Introduction
• Changing Dynamics: How Expectations and the Role You Play in Your Relationships May Change with a Lupus Diagnosis
• Starting the Discussion – How to Talk about Lupus With Your Support System
• In Conclusion

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Introduction:

Keeping relationships of family, friends, co-workers and others is rewarding, however, takes time and tender loving care.  Knowing that change is inevitable and knowing how to communicate effectively about your feelings can maintain the harmony and balance of these relationships while making sure your needs are met when you have lupus.

In “Managing Other People’s Feelings When You Are Ill”, we talk about acknowledging your own feelings as well as the feelings of those around you and how difficult that may be. A little effort up front, however, can make a huge difference later when you may not be feeling up to par. Setting the framework for effective communications and realistic expectations will help to ensure that your relationships stay strong and loving.

Changing Dynamics: How Expectations and the Role You Play in Your Relationships May Change with a Lupus Diagnosis

Your kids may run to you as the one who helps them with their homework. Your partner or spouse may rely on you to do the grocery shopping, fix the car or clean the house. Your friends may expect you to plan road trips or nights on the town. With a lupus diagnosis, however, those roles and expectations may have to change to some degree.  The question is, how to take this opportunity – create healthy, new expectations for whatever changes need to occur in your relationships and even make them stronger?

First and foremost, it’s important to try to not feel guilty about changes in your role as a member of the family. You have to take care of yourself and make yourself a priority – maybe for the first time in your life – in order to, in turn, be there for others. Second, you may have to change how you communicate with your loved ones in order to be heard and ensure needs are met – developing assertiveness skills is a boon. Third, you need to get comfortable telling others exactly how you are feeling and asking for help – you may have to ask your spouse or partner to pick up dinner, your kids to do their own laundry, or your friends to drive you to an event. This will undoubtedly be awkward at first, but in time you’ll develop a routine and it should become second nature and the “new norm” for all involved.

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Starting the Discussion – How to Talk about Lupus With Your Family and Other Support Systems

Chances are that your support system doesn’t have the knowledge about lupus that you do, and you may not even always fully understand what you’re experiencing. The people who love you may honestly be afraid for you of what your lupus diagnosis means – any change especially where health is concerned can cause anxiety. In “How Lupus May Affect My Life”, the Lupus Foundation of America suggests starting with the basics of lupus to open the conversation of what you are experiencing:

• Lupus is not contagious.
• Lupus is not necessarily hereditary.
• Lupus is not like or related to AIDS or cancer – it is an autoimmune disease where the body attacks itself as a foreign body..
• Lupus is a chronic, life-long disease for which there is no cure, but there are viable treatments. Many people who have lupus are able to live full, happy, productive lives.
• Individuals with lupus all experience the disease differently and how you experience it may change – it’s unpredictable.
• Lupus may present itself in skin rashes, or it can present internally and affect the kidneys, heart, or other internal organs. In other words, you may look perfectly healthy, but feel sick.
• Because of lupus, you may have to make some changes in your life and family and support roles may change. It’s important to come to terms and accept that change is inevitable.

The biggest takeaway here is to eliminate fear of the unknown. Once everyone becomes less afraid of lupus, energy can be spent on how to make the changes that need to be made in order for everyone to live more comfortably with this disease.

Communicating with Your Spouse or Partner

As your spouse or partner may share in the raising of your family and the day-to-day operations of the household, it’s important to keep the lines of communication open. R. Morgan Griffin of WebMD recommends talking openly and honestly about how your diagnosis makes each of you feel and how it impacts day-to-day life. Avoiding the topic altogether can be incredibly detrimental to your relationships. Griffin also recommends, however, that if you are having a hard time speaking about your feelings and lupus, seek therapy in order to gain effective coping and communication skills as a couple or family. It’s important for everyone to know how to ask for what they need, know when to give encouragement, and even know when to give each other space. How you, as partners, communicate will impact how your family communicates as a whole. For more information on the unique communication skills around intimacy with your spouse or partner, read “Lupus and Intimacy.”

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Communicating with Your Friends and Extended Support System

The same communication guidelines above go for communicating with your broader support system – they are still people who love you and care about you. It is equally important to make sure that your friends understand lupus and what changes to expect. It’s important for them to know that late night parties may be out of the question for you, but brunch on Sunday is a great substitute. When you were once able to drive yourself around town to meet up with them for dinner, you may now need to coordinate rides with someone. You may occasionally even have to ask friends for help – you may need help with childcare, picking up the dry cleaning, or need a ride to a doctor’s appointment. Chances are your friends will be more than willing to help when they can as long as they know what the expectations are and understand why. Be clear and – much like with your children – don’t over-burden them.  Rather, make them feel comfortable to express their ideas and feelings.

Communicating with Your Children

As a parent with lupus, it’s important to try to not feel guilty about your disease or how it may change your life and your children’s lives – you may need their help more than usual around the house on certain days when you’re experiencing symptoms or a flare. It is a delicate balance and you want to make sure your children feel heard as well. As you gain communication skills, be sure to teach them how to effectively express themselves and make them feel comfortable about coming to you when they feel troubled. WebMD suggests some of the following for reducing your own stress around lupus as well as the stress your children may experience:

• Let your kids ask questions – children are naturally curious – and may be scared when they know you’re not feeling well. Let their questions guide the conversation in a reassuring way. This practice should be on-going, and let your kids know that it’s okay to ask honest questions as they come up.
• Make expressing how you are feeling each day simple – devise a number rating system and write it on a chalkboard or white board in the kitchen or wherever your family centrally gathers. “!” may be a great day with minimal symptoms or “10” may be a bad day when you’re going to need a little extra help around the house. A number may be more impactful to a child than a longer explanation that may confuse or scare them.
• Create new traditions with your children – create low-stress ways to spend family time together even when you may not feel up to par or feel like leaving the house. Designate Saturday nights as “movie night,” or Sunday afternoons as “game day.” Even if you’re experiencing lupus fog a rousing game of Jenga may seem overwhelming. Just being near your family on the couch or at the table is an expression of engagement and love.

In Conclusion

While your relationships will change to some degree, they may also be greatly enriched. Developing patience, understanding, and effective communication skills will go a long way in sustaining and maintaining the loving relationships that you’ve all worked hard to create. Being authentic, open, and vulnerable will enable others to do the same. Yes, the dynamics may change, but your relationships, family, and support systems may become more resilient as they are built on a strong foundation of trust, support, respect, and love.

 

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References

Griffin, R.M. (n.d.). Parenting with lupus. Retrieved from: https://www.webmd.com/lupus/features/parenting-with-lupus#1

How lupus may affect my life. (2013). Retrieved from: http://lfach.convio.net/site/DocServer/How_Lupus_May_Affect_My_Life.pdf?docID=465

Managing the impact of lupus on your family. (2013). Retrieved from: https://www.lupus.org/resources/managing-the-impact-of-lupus-on-your-family

Reich, J. (2018). Living with someone who’s been diagnosed with lupus. Retrieved from: https://www.everydayhealth.com/lupus/living-with-someone-with-lupus.aspx

Rowshandel, J. (2018). Explain lupus pain and fatigue to friends and family. Retrieved from: https://www.verywellhealth.com/explaining-lupus-to-friends-and-family-4067137

 

Author: Liz Heintz

Liz Heintz is a technical and creative writer who received her BA in Communications, Advocacy, and Relational Communications from Marylhurst University in Lake Oswego, Oregon. She most recently worked for several years in the healthcare industry. A native of San Francisco, California, Liz now calls the beautiful Pacific Northwest home.

All images unless otherwise noted are property of and were created by Kaleidoscope Fighting Lupus. To use one of these images, please contact us at [email protected] for written permission; image credit and link-back must be given to Kaleidoscope Fighting Lupus.

All resources provided by us are for informational purposes only and should be used as a guide or for supplemental information, not to replace the advice of a medical professional. The personal views expressed here do not necessarily encompass the views of the organization, but the information has been vetted as a relevant resource. We encourage you to be your strongest advocate and always contact your healthcare practitioner with any specific questions or concerns.