Living with a chronic illness or injury can be tremendously challenging and alter your life in various ways, mentally, physically, and emotionally.
A less discussed but highly impactful aspect of this experience is the potential shift in your relationships, particularly the understanding and empathy offered by close friends and family.
I see this dynamic frequently in my therapy clients with orthopaedic or brain injuries from sudden trauma, along with conditions such as Fibromyalgia. I have experienced this process myself with a spinal fracture that is still awaiting intervention and a long-term prognosis after, almost six months.
Chronic conditions often come with symptoms that are not visibly apparent. Invisible pain, fatigue, and emotional distress can make it hard for others to comprehend the intensity of the struggle experienced by the person.
Over time, this invisibility can strain relationships as loved ones struggle to understand the reality of the sufferer’s daily life, possibly leading to waning empathy. The person with the condition can also desensitise to their own pain and struggles and it simply becomes the new norm, but with a much lesser quality of life, impacting thoughts, feelings, and behaviour.
Another factor that might dilute empathy over time is the persistent and unchanging nature of chronic conditions. The condition becomes a part of the everyday reality not just of the person, but of their close circles as well. As human nature often prompts us to adapt and normalise, friends and family may also unintentionally grow desensitised to the sufferer’s unending struggle, leading to an incremental decline in their empathetic responses.
The experiences and perspectives of individuals with chronic illness or injury significantly differ from those of their friends and family. Loved ones may grapple with feelings of helplessness or frustration, or they may harbour misconceptions about the condition. These differing perspectives can sometimes create emotional distance or lack of understanding, and by extension, empathy.
Bridging this empathy gap requires open communication, psychoeducation, and development of a shared understanding.
Here are some strategies that can help:
1. Transparent conversations
Encouraging transparent and honest conversations about the person’s experience can enhance understanding and empathy. Sharing feelings, experiences, and challenges can create a shared language of empathy over time.
Providing loved ones with information related to the nature, symptoms, and impacts of the chronic condition can enhance their understanding and empathy. This can include sharing reliable books, articles, or resources about the specific condition.
3. Support groups
Support groups offer a platform for individuals living with chronic conditions and their loved ones to share experiences, challenges, and strategies, thereby fostering mutual understanding and empathy.
While chronic illness can challenge the empathy among close friends and family, it does not have to define or limit these relationships. Let’s consider the perspectives of the person with the chronic condition and of their loved ones to see what each can do to reignite empathic embers.
Strategies for the person with a chronic condition
Living with a chronic illness or injury can be a challenging journey, filled with physical discomfort, emotional stress, and an overwhelming sense of uncertainty. Having the support of loved ones significantly contributes to managing this journey better. However, effectively communicating your needs and expectations can, at times, be difficult.
Here are some steps and strategies that can help gain support you need from your loved ones.
1. Clear and Honest Communication
Often, loved ones may not fully comprehend the depth of your pain or the complexity of your situation. Openly sharing your feelings, struggles, and fears can help them understand your experience better. It’s important to express your needs clearly—whether you need physical assistance, emotional support, or simply the company of someone you trust.
2. Seek Understanding, Not Just Sympathy
While sympathy can provide temporary comfort, understanding drives long-term support. Encourage your loved ones to learn about your condition. Share articles, research papers, or connect them with your health care provider for a deeper understanding of what you’re going through.
3. Set Boundaries
Living with a chronic condition often means dealing with fatigue, pain, or periods of low mood. During such times, it’s essential to communicate your limitations to your loved ones. Setting boundaries on your time, energy, or emotional capacity can help maintain a healthy balance in relationships.
4. Encourage Mutual Sharing
Create an environment that invites your loved ones to share their feelings too. They might be scared, worried, or feel helpless about your situation. Encouraging open dialogue helps to cultivate understanding, mutual support, and a stronger bond.
5. Ask for What You Need
Don’t hesitate to explicitly ask for what you need. If you need help with daily chores, managing medication, or attending medical appointments—ask. If you prefer quiet company over conversation, express that. Remember, it’s okay to ask for help, and articulating your needs helps others provide effective support.
6. Explore Support Groups
Support groups could be a beneficial resource for both you and your loved ones. They provide an opportunity to connect with others who understand your journey. Encourage your loved ones to attend these sessions with you or on their own. This can help them gain new perspectives.
Strategies for loved ones
For individuals living with a chronic illness or injury, the road can often seem long and unending. As a loved one—be it as a friend, family member, or caregiver—standing by their side on this journey can sometimes feel arduous and emotionally draining. However, your continued support serves as a valuable pillar of strength for them.
Here are some strategies to sustain your support, even when it feels like the journey will never end.
1. Understanding Their Reality
Immerse yourself in understanding the realities of living with a chronic condition. Read information, attend consultations with them, or join support groups to gain insights into their experience. This understanding can help you empathise better and address their needs more effectively.
2. Consistent Communication
Maintain open lines of communication. Share your fears, frustrations, or concerns, but also ensure to listen to them expressing their feelings and experiences. Show them that their voice is heard, and that they are not navigating this journey alone.
3. Flexible Support
The needs of individuals with chronic conditions can change over time. Be adaptive and flexible in your support, tailoring it to their changing requirements—physical, emotional, or otherwise. This could range from assisting with simple tasks, providing a listening ear, or just offering silent companionship.
Just as important as it is to care for your loved one, it’s equally crucial to care for yourself. Ensure you have time to rest, relax, and recharge. Keeping yourself physically and emotionally healthy not only helps you, but also ensures you can continue to provide the support your loved one needs.
5. Seek Assistance
You don’t have to do it alone. Reach out for help when you need it—whether it’s other members of the family, a community of friends, professional caregivers, or support groups. Sharing your responsibilities can lighten your load and provide a more well-rounded support system for your loved one.
6. Normalise Joy
A chronic illness or injury may be a major part of their life, but it doesn’t have to be the only part. Create memories and experiences that are about joy and love, and not just about their condition. This can help bring positivity into their life—and yours.
Supporting a loved one with a chronic illness or injury, especially when the journey seems endless, can be a challenging route. However, your unwavering support is invaluable to them.
By enhancing your understanding, communicating effectively, taking care of yourself, and preserving moments of joy, you’ll be able to foster a supportive and loving environment that strengthens both you and your loved one in navigating this challenging terrain.