Open lines of communication between a patient and caregiver is a very important part of living with an autoimmune disease. 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 (short- or long-term). By creating honest, open lines of communication, the patient/caregiver relationship can become a source of information and strength while creating healthy boundaries.

Things to remember for both the patient and the caregiver:

  • Act as a team because you are.
  • Try to go to medical appointments together so information is clearly understood by both of you.
  • 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.).
  • Work with the immediate family.
    • Discuss the patient’s needs and determine what individuals can and cannot accommodate (chores, medication, assistance, days and times, etc.).
    • Speak honestly and age-appropriately with children.
  • Encourage external friendships for additional support, entertainment, and stress relief.

It doesn’t matter if you have been living with an autoimmune disease, or caregiving for someone who does, for years or days. It is never too late to talk about these points.  One of the challenges with autoimmune illnesses is the roller coaster of flareups and remission because nobody knows when they will happen or for how long.

Additional conditions or complications, plus any treatment changes, can affect entire families.  What if the doctor recommends a significant diet change? Regardless if the patient and caregiver live together, they should talk about how everyone can support this shift. Does everyone go on the same diet? Are meals cooked at different times? Does everyone accept compromises?

This is easier said than done.  Caregivers, family, friends, and coworkers sometimes walk on “eggshells” around the patient to avoid uncomfortable, confrontational, or negative situations. Honest, open, and clear communication ease the burden of disease for everyone involved.