Caring for Loved Ones with Autoimmune Disease

Caring for someone with an autoimmune disease can be just as challenging as it is rewarding. By creating honest, open lines of communication, the patient/caregiver relationship can become a source of information and strength while creating healthy boundaries. Think of the patient/caregiver relationship as any other relationship: two people working together towards a common goal. In this case, it’s the challenge of facing an autoimmune disease. As such, both people should ask for what they need (in general and from the other), respect each other’s needs, and speak up if or when they cannot meet those needs.

Support for Caregivers

In an effort to help those caring for others, many organizations provide resources and offer tips designed to empower caregivers. If you are in need of some extra support, we encourage you to connect with some of these supporting organizations:

National Alliance for Caregiving

Mental Health Resources for Caregivers

Easter Seals Caregiving Resources

MentalHealth.com

Caregiver Tips

  • Act as a team
  • Go to medical appointments together when possible so information is clearly understood by all
  • Understand the patient may ask for help even if they do not look or act “sick” (because they are)
  • The patient and caregiver should agree on what information will be shared (disease, treatments, side effects, etc.) – and with whom (friends, family, kids, coworkers, etc.)
  • Discuss the patient’s needs and determine what individuals can and cannot accommodate (chores, medication, assistance, days and times, etc.)
  • Encourage friendships for additional support, entertainment, and stress relief

Still have questions?

Reach out to us and a member of the Autoimmune Association team will be happy to assist!