The Unique Challenges of Caregiving for Rare Diseases

Written by Sara Fioriglio on . Posted in Family Caregivers Blog

Caregivers face numerous challenges, some unique to the particular disease or individual they care for, and some more general. Common obstacles such as emotional burnout, maintaining physical and mental health, balancing family/personal time, and being charged with making major decisions for their patient are few instances in which they deal with day to day. Additional challenges arise when it comes to caregiving for those with rare diseases like Ewing’s sarcoma, leukemia and lymphoma, and mesothelioma, an asbestos caused cancer that affects around 3,000 people each year.

With this November being National Family Caregiver Month, we’d like to offer some helpful tips associated with caregiving for rare cancers:

Find a detailed and regularly updated source of information.

While there are many major outlets that provide information on a multitude of conditions, they can’t always include the level of detail that a patient or caregiver would like. Attempting to seek out relevant information and updates can become a hefty job. Finding a resource that can become a one-stop shop for the information you need will save time and stress.

Be prepared to explain the illness.

When you care for someone living with a rare disease you probably don’t expect to have in depth or frequent conversations about the illness. While meetings with doctors and updating family/friends on your loved one’s prognosis seem routine, you may also be bombarded with questions from well-meaning acquaintances. Many people you encounter may not be familiar with the specifics. In order to help cope with these questions, it’s a great idea to create an elevator pitch to help quickly educate those who are looking to learn more.

Seek out support groups.

Finally, caregiving is no small task, and the people charged with this duty deserve all the support they can get. Unfortunately, since there are fewer people diagnosed with these diseases, there are also fewer caregivers who have walked in your shoes. It may not be possible to find people in your area with whom you can connect and share stories. The best option is to look for bloggers or other online communities to find people who are encountering the same experiences. Even if you can’t find a group dedicated to caring for people coping with a specific illness, it can be helpful to seek out communities focused on caregiving in general or groups outside of the health field that can offer emotional support.

National Family Caregivers Month is about celebrating the hard work and dedication of caregivers for all diseases!  If you’re looking for more information be sure to check out the Family Caregiver Alliance.

Article written and supplied in collaboration with the Mesothelioma Awareness Center.

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