Support and understanding from loved ones can be a major source of comfort for people with leukemia. Likewise, feeling unsupported or misunderstood can make the experience of cancer even more difficult. “It makes a big difference when you have support and compassion on this journey,” a MyLeukemiaTeam member wrote.
Some people with leukemia have family members who act as caregivers, accompany them to chemotherapy, or even donate stem cells. “My son took time away from his job to be with during my hospitalization and remained with me after my return home, sitting with me through hours of treatment,” a member wrote.
Engaging with their loved one’s treatment and seeing their daily struggles can foster a deep sense of understanding: “As a caregiver, it's so hard watching my husband deal with feeling so bad from chemo. My husband is not one to stay in the house, and he's spending a lot of time in his recliner feeling bad,” a spouse on MyLeukemiaTeam wrote.
It can be harder for friends and family to understand the challenges of living with leukemia if they don’t notice changes to someone’s physical appearance or behavior. “You will always have people around you saying you don’t look sick,” one member wrote.
Those in the “watch and wait” state sometimes experience a lack of understanding because they’re not undergoing treatment. “My family is not very understanding since I'm just on watch and wait. They think it's only chemo that causes the fatigue,” a member wrote.
Members wish their loved ones could walk a mile in their shoes. “I wish for one day he could step into my body and really see how I feel with pain,” a member wrote about her husband.
MyLeukemiaTeam members sometimes to choose to hide their struggles from family: “I put on a smile and act as if I'm okay during family get togethers.” Presenting a strong front may be helpful in certain circumstances, but it prevents family from understanding the reality of leukemia. The same member added, “They don't see the new normal and how I really feel.”
At MyLeukemiaTeam, support and understanding are always abundant. “You are not alone,” a member replied to a teammate. “I want to assure you that you have this family to help you through this. I am here for you.”
Members talk about a range of personal experiences and struggles on MyLeukemiaTeam, the social network and online support group for those living with leukemia. Issues with family understanding are one of the most discussed topics.
Can you relate? Share your insights in the comments below or directly on MyLeukemiaTeam.