Talking to someone with a chronic illness

Editor’s Note: Lisa Copen is the founder of Invisible Illness Awareness Week. She has lived with rheumatoid arthritis for nearly 20 years. She spends her time encouraging others who live with chronic illness or pain through her organization, Rest Ministries.

Story highlights

Those with chronic illness can be left feeling as if you don't understand

This can affect relationships with those you care about

Take opportunities to offer help in a supportive way, expert says

CNN  — 

When people we care about are in pain, we want to offer words of encouragement, help ease their pain and motivate them to stay hopeful.

Unfortunately, our words of cheer can often be misinterpreted by those who live with chronic illness. Rather than feeling supported, our words can evoke the feeling of “she doesn’t understand my life at all.” This can permanently affect our relationships.

This week is National Invisible Chronic Illness Awareness Week, aimed at increasing communication between the chronically ill and those who care about them.

Here are some tips to keep in mind when talking to a friend living with an invisible illness.

Lisa Copen founded Rest Ministries to encourage those who live with chronic illness or pain.

What not to say:

You look so good!

Although this seems like a compliment, it’s frustrating to an ill person. Although he or she may wish to look better than they feel, it seems as though you are saying, “You can’t really be sick. You look fine to me.” It invalidates a person’s pain and symptoms.

You need to just stop thinking about it and get busy.

True chronic illness doesn’t heal itself because of distraction. Although some people may dwell on the details of their illness, it can seem emotionally overwhelming when your life revolves around new symptoms, medication side effects, infections from a lowered immune system and the illness itself. He or she would likely love to do something fun, but fatigue and pain prevent it.

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You should try this new health supplement. It can’t hurt.

Actually, the supplement may be the exact opposite of what our body needs, and “natural” doesn’t always mean “safe.” People have good intentions, but the chronically ill are doing their best to navigate the road of Western medicine, alternative treatments and finding the best medical team.

I wish I had the luxury of being sick instead of having to go to work every day.

Most people want to be able to work, and being physically unable to do so can cause great depression. Those with illness realize they don’t have the burden of getting up and going to work each day, but they also have medical bills that they may never be able to pay off, as well as fears of not being able to support themselves.

They don’t have as much free time as you think. The medical appointments, pain and paperwork take a large portion of time.

Don’t give in. You need to fight this illness.

Those who are ill are fighting their illness every day they wake up and get our of bed. And on the days they can’t get out of bed, they are determined to still have a life that is full of joys and memories, special events and loved ones. By taking medication or trying a new therapy, they are not “giving in.”

Illness is caused by stress. You just need to learn to cope better.

While illness can be exaggerated by stress, stress rarely is the source of the genetics that cause illness. Those living with an illness are doing the very best they can to cope, but comments like the ones above make them, well, stressed.

Love during chronic illness

Here are some ideas on what to say:

I don’t know what to say, but I care about you.

You don’t have to try to fix it, and instead of saying, “I know exactly how you feel,” an ill person would love it if you would just admit, “I don’t have any idea what you are going through, but I am here if you need to vent.”

Sometimes we just need one person who will listen and then we can move on to other topics.

If you need to cry, I’ve got plenty of tissues.

Every now and then we just need a good cry. Between the emotions certain medications cause, plus the stress on our marriages, careers and more, we occasionally need to cry.

Instead of being one more person who says, “Don’t cry,” tell your friend you will sit with her while she cries. It is an intimate gift that only true friends will offer.

I’m bringing dinner Thursday. Can you eat lasagna or chicken?

People who are chronically ill rarely have anyone bring them a meal or take their kids for a play date. Since moms and dads with illness do their best to keep up with life, they are seen out and about and they “look just fine.” But you may never know how much they suffer silently in their home.

A meal for the family or babysitting the kids so parents can have a date night is a great way to provide support.

I am going to the store tomorrow. What can I get for you?

If you are running some errands, let your friend know in advance so he or she can write a short list. Being able to pick up heavy things can also be helpful, like a gallon of milk or laundry detergent. Bring them into the house and ask if you can put them away.

You are going through so much, yet you still have such joy. How do you do that?

If you see a friend who is coping well with his or her physical limitations, ask yourself what you could learn.

Rather than saying, “Thank goodness that isn’t me; I could never do that,” ask them what motivates them when they are in pain, or how they prioritize to make the most of limited energy. Where do they find hope when the circumstances look bleak?

Those who live with illness learn a lot about the ups and down in life and would love the opportunity to share the wisdom they have discovered.

Meredith Viera and her husband on living with chronic illness