Sickness, Stigma, and Social Segregation, Part 2

"There is no fear in love, but perfect love casts out fear; for fear has to do with punishment, and whoever fears has not reached perfection in love." (1 John 4:18)

When an individual and their caregiver are coping with an illness or disability that bears a social stigma, education is essential – for the patient, for family caregivers, and for friends and neighbors.  Education quiets fears and prejudices, roots out misconceptions, and leads to greater acceptance.  Misinformation (particularly via the internet) is common, so it is important to learn the facts from a credible source; the health care provider and reliable internet websites ( www.nih.gov and www.mayoclinic.com are good choices).

Disease-specific support groups can educate and diminish your feelings of isolation and shame; these support groups provide a network of friends when other friends choose not to be available.  You, too, can become a source of information if you and your loved one chose to share your experiences with others.  The more we learn about a disease and the more we can observe those who face it, the less likely we are to stigmatize.  When you choose to share information about your disease, you do not have to answer inappropriate questions such as, how many sexual partners did you have, how much did you smoke, or how much longer will he live?
 

Learn to protect yourself and your loved one emotionally and physically. Disabled individuals are often openly stared at or ignored rather than be appropriately acknowledged.   Try never to put your loved one in the position of being embarrassed because of their disease process.  If you know they hate to go out in public because of a symptom or a functional limitation, do not force the issue.  If you, as a caregiver or family member, are embarrassed by these same things accept, it for what it is and don’t force yourself.  Your loved one is often better off if someone else accompanies them, so that you discomfort does not become their discomfort, too.  Continuing to include your loved one in outings as long as possible is emotionally healthy for all involved.

The value of human contact can never be underestimated.  Talk to each other, laugh and cry together. Touch each other gently and lovingly as you did before.  Touch is healing:  it allows us to comfort and bring peace and pleasure to those we care about.  Family and friends should be encouraged to touch a hand or share a hug. There are some diseases that require protective measures for caregivers.  If you have questions about contact, ask your trusted healthcare professional about appropriate safeguards – but don’t withhold contact out of fear.

When a loved one is ill, they may give little thought about what their family caregivers are going through.  Share your feelings in an open, honest, but gentle manner.  If you are uncomfortable with some aspect of caregiving, share your feelings and find others who can assist with these tasks.