In the Blogs: Ten Things You SHOULD Say to Someone With a ChronicIllness

By Susie 

A few weeks ago, I wrote a post about "15 Things Not to Say to Someone With a Chronic Illness." It has been by far the most popular post on my site. I am so glad that it has resonated with people, and hopefully a few people learned how to better relate to people in their lives with chronic illnesses.

A few people have mentioned to me that I should write about what people should say to people with chronic illnesses. So I can’t guarantee this list will apply to everyone, but here are ten things that people with chronic illnesses want to hear:

1. "I believe you."

I already mentioned that this is the most powerful thing you can say to someone with a chronic illness. People who live with chronic illnesses are often met with doubt. Seeing is believing, and when you look outwardly healthy, people have a hard time believing you feel as sick as you say. For a person with a chronic illness, having someone believe them is validating and comforting. It will help them trust you because they are probably worried about whether you and the people in their life believe them or not all the time.

2. "Can I come over and hang out?" 

Asking them if they want to come and hang out can be good too, but sometimes just the thought of leaving the house can be overwhelming for someone with a chronic illness. It takes up valuable energy- leaving little to do the fun activities that they were planning to do outside the home. You offering to come over is a huge gesture. It shows that you want to spend time with them, even if they aren’t up for leaving the house or doing something that takes energy.

3. "Can I bring you food? or "Can I come over and help out around the house?"

Obviously these aren’t things you should say or do all the time, because you probably don’t have time to do this every day. But on a day that you have time, or if you are already running errands for yourself, taking the extra few minutes to help your friend with a chronic illness will make a huge difference for them. For me, sometimes just doing the dishes is enough to make me need to take a nap. And on bad days I struggle to find the energy to get food. Offering to do these favors, whether or not they accept, is a wonderful gesture. It will help someone with a chronic illness feel that you understand what they are going through and care about them. Offering something specific is more helpful than just asking, is there anything I can do? (Not that that isn’t good to say as well!)

4. "I know how hard you are trying."

This is the opposite of “why don’t you just push through it?” and it is one of the best things you can say. Everyone likes their hard work acknowledged, but most people don’t see just making it through the day as hard work. For someone with a chronic illness a lot of times it really can be. And when I am working really hard just to make myself exercise for 10 minutes or do my biofeedback for the day, that outside encouragement can be the motivation to help get through it.

5. Any kind of "Hello," or checking-in after not seeing them for a while

Sometimes someone with a chronic illness doesn’t leave the house for a long time, or misses a lot of school or work. And adding to the difficult of their illness is the feeling of being forgotten or left behind. Out of sight, out of mind, right? So just checking in and saying hi and letting them know you’ve been thinking about them when you haven’t seen them around lately will go a really long way. It will probably make their day, and you will feel good for reaching out to them.

6. "You are so strong."

Constantly being in a fight with your own body is hard work. People with chronic illnesses usually feel weak from this fight, either physically, mentally, or both. Hearing that they are strong is validation that all their hard work is not unseen. And it can serve as a reminder that they have the strength to keep fighting day in and out.

7. "I know how hard this was for you - thanks for using your energy to spend time with me."

A friend of mine mentioned that her friend once said this to her after a long phone conversation. I realized how touched I would be if someone said this to me. Saying this helps a person with a chronic illness feel that you understand what they are going through and appreciate having them in your life. It also should make you feel good that someone with a chronic illness chooses to spend their limited energy with you, because it means they care about you!

8. "Don’t feel bad if you have to cancel plans at the last minute, I understand."

One of the constant feelings that comes along with a chronic illness is feeling guilty or like you are a burden to people in your life. I always feel terrible for canceling plans, and I sometimes do it at the latest possible moment because I am hoping I will feel better. And I sometimes beat myself up about it, even though it’s out of my control. I know this is common for people with chronic illnesses. Letting them know you don’t hold it against them will help alleviate that guilt. And it will make them more likely to make plans with you in the future, because they won’t be afraid of losing you as a friend if they cancel on you too often.

9. Sometimes the best thing you can say is nothing - just giving them a hug or lending them an ear.

This is true of all people, right? Not just those with chronic illnesses. Sometimes the best, most supportive thing you can do for a friend or loved one is just show your support through a loving hug or letting them vent to you. Hugs are good for your health, so go hug your friends who have chronic illnesses. Usually just being a good listener is more helpful than trying to give good advice when you haven’t experienced chronic illness first hand.

10. "I know this isn’t your fault."

One of the main themes running through a chronic illness sufferers head is often self-blame. Which is totally unreasonable for most people. But it’s hard not to think, “If I only pushed myself a little harder” or “If I only ate a little healthier” or “If I only exercised for 20 minutes yesterday instead of 10 I would be better.” People with chronic illnesses learn from experience that these “if only’s” are just wishful thinking. Because the illness is not your fault. And so having an external reminder of that fact can really help solidify that idea for people with chronic illnesses, and help them remember that you don’t blame them for it either.

Bonus: When all else fails and you aren’t sure what to say: "I wish I knew what to say, but I care about you and I’m here for you."

You may never understand what it is like to have a chronic illness, and that is okay. That’s actually good, because it’s not usually a fun experience. But when you can’t think of what to say, it’s okay to say you don’t know what to say. And follow it up with a reminder that you care about them and you are there for them if they need you. Because when it comes down to it, it’s not about saying the absolute perfect thing, it’s about showing that you care.

This list is not meant to imply that these are the only things you should say to someone with a chronic illness. All of these things should get through to someone with a chronic illness and be touching for them, depending on who the person is. Having a good support system is important no matter what situation you are in, and so these kinds of things let the person in your life with a chronic illness know you are on their team.

On the Blogs: Top 10 Stigmatized Health Disorders

Please try to help  -- don't blame or shame!

by Stephanie Pappas, LiveScience Senior Writer

Sickness and Shame

As if being sick weren't bad enough, some diseases come with a social stigma that can make sufferers hide their illness.

#10  Colon Cancer: Colorectal cancers are very curable in the early stages, according to the National Institutes of Health. Unfortunately, colon cancer often sneaks up without symptoms, and even if symptoms do show up, patients may be embarrassed to talk about diarrhea and abnormal bowel movements with their doctors. The best way to diagnose colon cancer is early screening, including colonoscopies.

Journalist Katie Couric tackled the stigma surrounding this bowel cancer straight on in March 2000 by televising her colonoscopy. Along the way, she proved that talking about hidden diseases can help people seek medical care. According to a 2003 study in the journal Archives of Internal Medicine, colonoscopy rates went up after Couric's TV special. Before the campaign, a physician could expect to conduct 15 colonoscopies a month. For 9 months after Couric's on-air procedure, that number jumped to 18 colonoscopies per physician per month.

#9 Erectile Dysfunction: The stigma surrounding erectile dysfunction has lessened in recent years, thanks to hours of commercials depicting happy, wholesome couples dancing to the soundtrack of an announcer talking about pharmaceutical side effects. But it can still be tough for men to admit to sexual dysfunction. According to a 2010 review of sexual dysfunction treatments published in the journal Primary Care: Clinics in Office Practice, only half of men with erectile dysfunction get treatment.

Men with erectile problems shouldn't feel alone, however. According to the same report, 10 to 20 million American men have erectile dysfunction, and by age 70, about two-thirds of men have trouble achieving or keeping an erection.

#8 'Manly' Problems: If erectile dysfunction is surrounded by a stigma of unmanliness, some female disorders come with symptoms that challenge our cultural definitions of femininity. Polycystic Ovary Syndrome, a hormone disorder that can cause infertility and diabetes, among other medical problem, is often marked by excessive facial hair. That symptom can leave women struggling to shave, wax or otherwise hide their hirsutism.

Disorders like hyperhidrosis, or excessive sweating, can be stigmatizing to both genders. But the disorder comes with extra baggage for women.

"You know, with women, you don't want to be someone who is sweaty," Sophia Wastler, a 36-year-old Virginia woman with hyperhidrosis, told LiveScience. "It's kind of more of a male characteristic than a female characteristic, so it's quite embarrassing."

#7 Psoriasis: Psoriasis is a chronic immune disorder that causes patches of cracked, scaly skin. These outbreaks can be hard to hide and understandably embarrassing. The embarrassment is multiplied by people who see psoriasis and shy away, mistakenly believing the disorder is contagious.

According to a 2008 survey by the National Psoriasis Foundation, 63 percent reported feeling self-conscious about their skin. More than half, 58 percent, said they felt embarrassed, and one-third said they limited their social interactions and dating because of psoriasis flare-ups.

#6 Irritable and Inflamed Bowels: Any disease related to excretion is bound to come tied in some sort of stigma. Irritable Bowel Syndrome (IBS) and Inflammatory Bowel Disease (IBD) aren't exceptions. IBD is actually a cluster of syndromes, all marked by the inflammation of the intestines. IBS is a vaguer diagnosis, but the disorder is marked by intestinal pain, cramping and constipation or diarrhea without the inflammation that marks IBD.

In general, IBS patients feel more stigmatized by their disease than IBD patients, according to a study published online March 2011 in the journal Quality of Life Research. Among more than 200 IBS patients surveyed, 27 percent said they felt moderately or extremely stigmatized, compared with 8 percent of the more than 200 IBD patients surveyed. The difference may be because without a clear physical cause, IBS sufferers feel their disease is not taken as seriously.

#5 Obesity: Fat stigma has gone global. According to a 2011 study in the journal Current Anthropology, there are almost no cultures that don't associate obesity with laziness and gluttony, despite the fact that many of these same cultures once saw heftiness as a sign of wealth.

Those who would shame the overweight often say they're concerned about the person's health. If that's the case, shame is likely to backfire? A 2011 study in the journal Social Psychology Quarterly found that shame and stigma hasten physical decline in people who are obese.

#4 Leprosy:  Leprosy, or Hansen's Disease, looms large in the public imagination. The disease is thought to be extremely contagious and believed to result in body parts falling off.
Wrong on both counts. More than 90 percent of people who come in contact with the bacteria that cause leprosy will fight the disease off without symptoms and without becoming contagious (though humans may be able to catch the disease from close contact with armadillos).

The disease is also curable with antibiotics. And while the skin lesions caused by the infection can be disfiguring without treatment, fingers and toes don't just fall off. This myth likely got its start because nerve damage to digits can cause numbness, putting people with leprosy at more risk of accidental injury or amputation.

#3 Lung Cancer: Like obesity, lung cancer is a condition that people tend to blame on the victim. The link between smoking cigarettes and lung cancer leads people to believe that sufferers bring cancer upon themselves. But in fact, thousands of people who have never smoked get lung cancer every year.

Besides, as Jamie Ostroff of Memorial Sloan-Kettering Cancer Center pointed out at the 2009 World Conference on Lung Cancer in San Francisco, people who have smoked are no less worthy of lung cancer treatment than those who have never lit up. According to LungCancer.org, the disease is the leading cause of cancer deaths in men and women, killing more than 158,000 people each year in the United States.

#2 HPV: Human papillomavirus (HPV) infects the skin or mucous membranes, often asymptomatically. But some strains of the virus can cause cervical cancer in women, making them dangerous sexually transmitted infections (STIs). HPV can also cause genital warts.
HPV became a flashpoint in the GOP primary elections in September 2011, when Republican candidates criticized Texas Governor and frontrunner Rick Perry for issuing an executive order in Texas that would have made vaccination against HPV mandatory for girls attending school in the state. Many other vaccines are already mandatory in Texas, but the HPV vaccine is controversial because the virus is spread through sexual contact. Medical experts say that the vaccine is most effective when administered before a person becomes sexually active and potentially exposes themselves to the virus. But Perry's attempt to make the vaccine mandatory was shot down by social conservatives, who argue that getting vaccinated may spur teens into early sexual activity.

#1 HIV/AIDS: Perhaps one of the most famously stigmatized diseases ever, HIV/AIDS first appeared as a mysterious syndrome in mostly gay men in the early 1980s. Anti-gay activists blamed gay men's "immoral" behavior for the spread of the disease, setting up a persistent victim-blaming attitude.

According to a 1999 study published in the journal American Behavioral Scientist, 52 percent of Americans still associated HIV with homosexuality, despite the fact that by that time, only about a third of new HIV cases were contracted by gay men. In 1997, the same study found, 55 percent of Americans believed that most people with AIDS were responsible for their illness, and 28 percent went as far to say that most of them deserved it.

As late as 2006, a Kaiser Family Foundation report found significant confusion among Americans about HIV. According to the report, 37 percent of Americans erroneously believed that HIV could be spread by kissing, while 32 percent thought it could spread via shared drinking glasses.