Living with a chronic illness can add complexities to life- often physical, emotional, and social. Social support, or lack thereof, can significantly impact your sense of well-being. Finding ways to communicate your experience and your needs (with or without disabilities or health issues) are crucial for creating a supportive, understanding, and empathetic relationships. It also makes daily life feel much more manageable and meaningful when those closest to you ‘get’ your experience and understand your needs.
Educate and Empower: Understanding begins with knowledge. Start with “where they are.” If they have no clue about your condition, share basic info with them and send them to reliable online resources. You’ll likely want to make sure that these resources explain the symptoms, treatments, and potential challenges associated with your illness. Encourage them to ask questions and engage in open conversations with you.. The more they know, the better equipped they will be to provide meaningful support. You might also wish to provide information about how your condition is affecting you personally, and let them know if you now have new needs or require any accommodations when participating in social or family activities.
Express Your Feelings: Talking about feelings can be hard, especially if it’s entirely new to you, but it's a crucial step in helping your loved ones understand the impact of your chronic illness on your life. Share your feelings, fears, and frustrations openly. Be honest about both the physical and emotional toll your condition takes on your daily life. Expressing your experience deepens your connection with those you trust.
Set Realistic Expectations: Chronic illnesses often come with unpredictable symptoms and energy fluctuations. Setting realistic expectations about what you can and cannot do can be incredibly helpful for your relationships. Try to have some self-compassion in this process, as knowing what is “realistic” often requires experience as well as trial and error. If chronic illness is new to you, or if your symptoms have become unmaneageable, sometimes it may be helpful to “underpromise to overdeliver” to reduce the likelihood of self-care and social expectations coming into conflict. Pacing and saying “no” to more things can be helpful, too, if your health needs prioritization and you haven’t been able to develop a feeling for what expectations might be realistic yet. Regardless of where you are in this process, , you can remind your loved ones that that your abilities may vary from day to day and that flexibility in plans may be necessary. This can prevent misunderstandings and alleviate potential frustration on both sides.
Create Space for Empathy: Share stories from your life, so they understand your daily challenges.. Sometimes, just having someone genuinely listen can be incredibly therapeutic. Make it clear that you value their understanding and support, and that their willingness to listen is meaningful to you.
Provide Updates on Your Health: Keeping your family informed about changes in your health, treatment plans, and any developments in your condition is essential. Regular updates help them stay connected to your journey and reinforce the idea that you're all in this together. It also allows them to adjust their support strategies based on your evolving needs.
Offer Practical Suggestions: Sometimes, people want to help but might not know how. Take some time to think of supports you might need. If you are so emboldened, provide some practical suggestions on how your loved ones can support you. Maybe you need a ride to an appointment, a grocery store run, a listening ear, or some help with a challenging chore. Being clear about this stuff gives people the opportunity to show up for you when they might not otherwise know how.
Conclusion:
Living with a chronic illness can be undeniably challenging, but fostering awareness with your loved ones can make your life feel more manageable. An informed and understanding social circle can help you stay connected and engaged even when your abilities have changed, rather than making you feel cut-off or isolated in your experience.
Please remember, mileage may vary depending on the nature of your current family relationships and friendships. For example, providing information might be easy and helpful action step for some, but a fruitless task if you share this with someone who is in denial about your condition or rejects medical information. Similarly, expressing feelings may come more easily to some and their loved ones may even expect it from them; but others may have little access to how they are feeling or their friends and family may lack the emotional skills to demonstrate support. Think of each of these suggestions as a place to start and consider any barriers as part of your own process of moving towards greater understanding and awareness of yourself and others. If you do experience any of these obstacles, call on self-compassion if you have access to it, or act “as-if” you do.
