Behind many rare disease patients are caregivers who lend support. Some people are lucky enough to have a wide support system, with friends, family, and medical professionals all lending a hand. Other people have a devoted person who assists them with everything from mobility to medication management. Despite the critical roles these caregivers play, their needs often receive no attention.
TREND Community was founded by two devoted caregivers, so we know about the commitment that comes with the title: the balancing of responsibilities and the need for self-education. Sometimes being a caregiver can feel like a full-time job in and of itself.
We also know that many caregivers do not view their position as one of sacrifice. The person for whom they care makes the task a privilege that can be extremely rewarding.
We also know about the emotional and physical health of the entire family, and how those two things can be affected by a disease or condition. There can be serious ups and downs. With the downs, there are so many feelings that can race through the minds of caregivers. They might feel exhausted or guilty. They might not feel like they are doing enough.
Self care is important. When caregivers neglect their own personal needs, it inhibits their ability to effectively provide care, and often results in burn out. Managing those emotions can be difficult, and we often see communities of caregivers coming together online to provide support to one another and share common experiences.
TREND knows that it is ok to feel these feelings. We want to do more to learn about the lives of caregivers and cast light on their unique, often underserved needs.