Living with lupus isn’t just about managing symptoms; it can take an emotional toll on both you and your loved ones. The unpredictability of flare-ups can be stressful and frustrating.
Your partner, family, and friends might find it challenging to understand your condition fully, leading to feelings of isolation or misunderstanding. Let's chat about this and go through some useful tips to keep your relationships strong.
Communication is Key
Honest communication is vital in managing relationships affected by lupus. Sharing your experiences and feelings openly helps your loved ones understand what you’re going through. Encourage them to ask questions and express their feelings too, which fosters empathy and strengthens your bond.
Physical Intimacy Challenges
Lupus can affect physical intimacy due to pain, fatigue, and medications that might lower libido. This can be difficult to navigate, but open dialogue with your partner about your needs and limitations can help. Find other ways to maintain intimacy together, like holding hands or cuddling.
For more detailed advice read the following from our Resident Sexual Health Clinician Dr. Ellis:
- How To Discuss Intimacy with Limited Mobility
- Disability and Intimacy: How to Foster An Intimate Connection Post-Disability
- Chronic Pain, Sex, and Intimacy
Sharing Responsibilities
Living with lupus often means you can’t always do everything you want to. If you’re used to doing all the cooking or other household chores, it might be time to share or delegate some tasks. It’s okay to ask for help and to take breaks when you need them.
Adjusting Your Social Life
Maintaining a social life can be tricky with lupus, but it's also important for your well-being. Last-minute cancellations might become more frequent, and that’s okay. Explain your situation to friends and let them know you value their support. True friends will understand and appreciate your honesty. In this day and age, FaceTime and Zoom can be a lifesaver when you need connection but also rest.
Staying Positive Together
Celebrate good days and small victories together. Recognize and appreciate the efforts your loved ones make to support you. Keeping a positive attitude isn't always possible, but it helps everyone cope better with the challenges lupus brings.
Seeking Professional Help
It’s okay to ask for help when you know you’re going to need it beforehand. Sometimes, despite your best efforts, the strain can be overwhelming. Seeking help from a counselor or therapist can provide strategies to improve communication and help you navigate the emotional aspects of living with lupus.
Support Groups
Support groups, whether online or in-person, offer a safe space to be vulnerable and gain perspective. Connecting with others who understand and share your experiences can be incredibly comforting.
Conclusion
Living with lupus undeniably affects your relationships, but with open communication and mutual understanding, you can maintain strong, supportive connections.
There’s a community out there and resources available to help you and your loved ones navigate life with lupus. If you need a place to start, here is an article from the Lupus Foundation of America on how to build the support system you need to cope with lupus. You are not alone!