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How Good Boundaries Make Life With Lupus Easier

Updated on September 11, 2019

There is an old saying: “Good fences make good neighbors.” Having healthy boundaries in relationships is important for everyone, especially for people with a chronic condition like lupus. Setting and defending boundaries allows you to protect your physical and mental health and focus on feeling your best while living with lupus.

Setting boundaries can be hard. Your friends and family may not be used to you saying no or establishing limits for when and how you are available to them. They may expect you to have the same energy you had before you developed lupus and symptoms like pain, fatigue, or butterfly rash. No matter what, you are entitled to establish the boundaries you need to maintain your emotional and physical wellbeing. Setting boundaries to take care of yourself does not make you mean or selfish – it helps you focus on what you need to do to care for yourself.

Here are a few tips for setting boundaries clearly and compassionately:

  1. Use clear, direct language. For example, “I cannot attend the birthday party” is clearer and more direct than “I’m not sure I’ll be able to attend the birthday party.”
  2. Use “I” language and avoid accusations. For example, “I go to sleep early. I am not able to take calls after 9 p.m.” is less accusing than “You always call late and wake me up!”
    MyLupusTeam.
  3. Don’t try to justify or over-explain your boundary. “No” is a complete sentence. For example, “I’m not able to take on new obligations right now,” is better than “I can’t drive carpool because having so many kids in the car stresses me out, and stress can cause my lupus symptoms to flare.”

After setting boundaries, do not be surprised if you need to defend them. Some people will likely test your boundaries, especially when they are new. Expect some pushback and consider what a good response might be.

Here are some examples of boundary testing and possible responses:

  1. After saying you cannot attend a party, someone attempts to use guilt to pressure you to go. You could explain that lupus isn’t taking that day off, so you will still be unavailable. You could point out that lupus feels bad enough without adding guilt, so you don’t feel guilty about saying no to things that will be bad for you.
  2. After setting a boundary of no phone calls after 9 p.m., someone calls at 9:15. You could choose to let the call go to voicemail. You could answer and ask whether the call is about an emergency. If it’s not an emergency, ask them to call back in the morning, wish them a good night, and hang up.
  3. After saying no to one new obligation, you are asked to take on another. You can point out that lupus is a chronic illness, meaning that it isn’t going away any time soon. Therefore your avoidance of new obligations applies to any new obligations, and if they ask again, the answer will be the same.

After testing your boundaries a few times, most people will understand that they are well-defended and learn to respect them. If you have allies who understand the challenges of lupus, ask them to help you defend your limits with others. Remember, you don’t need to apologize for setting good boundaries that help you stay healthy, manage your symptoms, and feel your best while living with lupus.

Here are some conversations from MyLupusTeam about setting and defending boundaries:

"Has anyone had mood swings? I don't know it's because of medication or my family. They rely on me for every single thing. No matter how tired or in pain I am. I still have to do stuff. I sometimes can't handle it."

"Today I pushed myself too hard and I will spend the next two days paying for it."

"For the past few months, I've been working myself crazy due to a shortage of employees at work. I keep telling myself to slow down because I'm in pain and exhausted."

Have you successfully set boundaries that help you manage lupus?
What tips would you recommend to help set healthy limits with others?
Share in the comments below or directly on
MyLupusTeam.

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