When your friend is coping with a chronic illness, it's easy to try to reach out and make him or her feel better with quick encouragement such as "just fight it, don't give in, you're stronger than this disease, don't let the illness win."
For those who live with an invisible illness, however, these words can be less than comforting. Consider for a moment that living with the emotional adjustment of illness can be as difficult as the physical changes. It's in the midst of trying to pace one's self through the fatigue, pain and loss of physical freedom -- while still juggling the chaos of life -- that the advice starts arriving.
And it can be heartbreaking.
Because regardless of the care and concern that may be behind the words, they are heard differently. Carla Yount, who lives with endometriosis and interstitial cystitis explains, "I just need for someone to realize and validate that I am pushing as hard as I can." Rather than validating one's pain and effort, the cliche comments like, "My sister's friend's neighbor had that and he tried some Vitaminwater and he's fine now," end up sounding more condescending than concerned.
When people offer advice on treatment options, it can be hard for those of us who are ill to be receptive. Usually those treatment tips we are told we should try, we have tried or already spoken to our doctors about. If there is a commercial about it on TV or the ad is in magazines, we've likely known about it for years.
Erin Burris, who lives with multiple hereditary exostoses (MHE) says, "It makes me feel like I'm stupid. Do they think I haven't looked everywhere for treatment options? It also makes me feel like I'm not trying hard enough to get better."
Generally, our society believes that chronic illness is something that happens to older adults. "It frustrates me when people speak down to me because of my age," shares Brittany Washburn who lives with reflex sympathetic dystrophy. It's not uncommon for young adults (anyone under 50) to hear "You are too young to have that!"
"I am not incompetent," says Brittany. "And I get hurt and upset when people compare me to others, especially to something completely different from what I have and live with every day," referring to how we quickly lump illnesses together that sound the same.
And although fresh air may be good for most people, a little vitamin D is not a cure. Being told to just get out of the house or find something to take one's mind off of the pain usually backfires.
Laura Seil Ruszczyk, who lives with dysautonomia, responds, "It is not that easy to just get out of the house or stay busy. Some days I can't get off the couch, let alone get anywhere else, so for someone to tell me to stay busy and things will be fine is very annoying. I need to pace myself as energy is at a premium and once it is gone it will not come back for awhile."
Invisible Illness Awareness Week is coming up in September and part of its purpose is to validate those with chronic illness as well as educate healthy friends on what words hurt and what words help. The following video shares some of the comments people give to those with illness that can sting or even cause the tears to fall moments after walking away.
Although many of these remarks may seem harmless or even encouraging to the one disbursing them, those who live with illness have heard them many times and they only bring up negative feelings that should be avoided.
"I feel very annoyed, frustrated and sometimes angry," explains Stephanie Emory, who lives with dermatomyositis. "I just need someone to genuinely care and listen -- not a lecture on something they know nothing about, or information that I already know and have tried. I think what bothers me most is some people are so condescending about it."
So how can you encourage a friend?
There are a wide variety of ways people can encourage those who are coping with a chronic illness. Consider times in your own life when you have coped with grief, loss, or trauma and the kind of comfort you desired. Odds are if someone handed you a book about coping you were more likely to throw it at the person than read it.
"I believe you. We know this is real and you are not imagining it," are precious words to Kathleen Keith Eakins. She was blessed to have family members who said this to her when the doctors told her that her disease was all in her head.
Megan Fulsom, who lives with dysautonomia and fibromyalgia among other illnesses, shares words she appreciates. "That I am strong and persevere. So much of the time I feel so weak -- and know that physically I am - -but I like to hear that I am emotionally strong and an overcomer. I always want to be recognized as a person that doesn't give up and who faces chronic illness head on and with hope."
Other kind words include, "Can I pick something up for you at the store? Could I borrow your kids for a play date while you rest? Would you like company while you wait for your test results? I can bring you dinner tomorrow! Chicken or lasagna? It's okay if you want to just sit and cry. I am not going anywhere."
When in doubt, just listen. And if you need to say something to a friend who is hurting, simply say, "I don't know what to say, but I am here and I care."
Invisible Illness Awareness Week is September 9-15, 2013. You can find more information, here.
Lisa Copen is an author and speaker, encouraging those who live with chronic illness through her ministry and outreach as an advocate. She is the author of Beyond Casseroles: 505 Ways to Encourage a Chronically Ill Friend among other books. Lisa has lived with rheumatoid arthritis and fibromyalgia for twenty years, since 1993, and resides in San Diego with her husband and son.
For more by Lisa Copen, click here.
For more on mindfulness, click here.
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