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Talking To Someone With A Chronic Illness


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#1 Hank

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Posted 14 December 2012 - 05:45 PM

I know support from friends and family is a frequent sore spot. Here is an article from Sept. 2012 that may be useful:



http://www.cnn.com/2012/09/11/health/invisible-chronic-illness/index.html




(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.

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.

Posted ImagePosted Image<a class="cnnvideo_clicklink" title="Click to watch this video" href="http://www.cnn.com/2...s/index.html#">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.

Living with Crohn's disease: 'Today I will fight again'

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.



#2 munky

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Posted 15 December 2012 - 12:46 AM

Again, I want a 'Like' button!

#3 SeeBee

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Posted 17 December 2012 - 04:05 PM

Again, I want a 'Like' button!

Agreed!

#4 Megssosleepy

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Posted 18 December 2012 - 11:46 AM

Again, I want a 'Like' button!


I was thinking that as I read too!! "Like"

Thank you for this Hank, I need to remind myself that when certain people say things that make them seem insensitive its just that they don't know what to say.

#5 munky

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Posted 19 December 2012 - 01:27 AM

Thank you for this Hank, I need to remind myself that when certain people say things that make them seem insensitive its just that they don't know what to say.


Exactly. The other day, while talking about sleep issues with the relative of a good friend, my narcolepsy came up. The lady's answer was, "Oh, you poor thing, I'm so sorry!"

I realize now, after thinking about it, what she meant to say is that she's sorry I have to deal with an illness that makes a normal life nearly impossible, but what sounded like pity in her voice really made me angry at the time. Why pity me? Sympathy might be nice, but pity? I don't need that. I am strong enough to do everything that I can to make my life as close to normal as possible.

So, yes, sympathize with the difficulties I face, but don't dismiss the strength it takes for me to push through them! That day alone, I had worked the night before, gone home, changed my clothes--got all dolled up, even--and went immediately out again to watch my young friend graduate from college. And I didn't fall asleep once, not even during the boring speeches, or the one that I couldn't understand what the man was saying even while he droned on and on. I may have passed out in my recliner as soon as I got home and changed out of my girl clothes, but I held on that long!

#6 Megssosleepy

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Posted 19 December 2012 - 10:55 AM

Exactly. The other day, while talking about sleep issues with the relative of a good friend, my narcolepsy came up. The lady's answer was, "Oh, you poor thing, I'm so sorry!"

I realize now, after thinking about it, what she meant to say is that she's sorry I have to deal with an illness that makes a normal life nearly impossible, but what sounded like pity in her voice really made me angry at the time. Why pity me? Sympathy might be nice, but pity? I don't need that. I am strong enough to do everything that I can to make my life as close to normal as possible.

So, yes, sympathize with the difficulties I face, but don't dismiss the strength it takes for me to push through them! That day alone, I had worked the night before, gone home, changed my clothes--got all dolled up, even--and went immediately out again to watch my young friend graduate from college. And I didn't fall asleep once, not even during the boring speeches, or the one that I couldn't understand what the man was saying even while he droned on and on. I may have passed out in my recliner as soon as I got home and changed out of my girl clothes, but I held on that long!


I would of been sleeping! That's awesome you were able to stay awake through that!

#7 munky

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Posted 20 December 2012 - 01:35 AM

I would of been sleeping! That's awesome you were able to stay awake through that!


It was so worth it, though. 13 years younger than me, and she's done something I've not yet managed to do. And even though it was hard, and there were times when she just wanted to give up, she kept going. She's like a little sister to me and I am SO PROUD of her! Heck, I'm so proud of her I even wore girl clothes! I mean, I own 3 dresses, and I wore one of them. With dress boots, instead of my usual work boots. And put my hair up all pretty, too! I'd've even worn makeup, if I owned any ... and knew how to put it on without looking like a clown. I may be female, but I am so not a girl. But, as my mother said, you dress to honor the graduates. And while I couldn't care less about the rest of the people who graduated that day, there were two things I could do for my girl: dress like a girl, and stay awake.