Chronic Illness Articles

May 13, 2010

Chronic Illness and the Hurtful Things People Say

by Lisa Copen

We may find ourselves surprised to discover just how much we are the on the minds of loved ones who are around us. They may actually be concerned about us more than we admit in regard to our illness. So when they comment about our illness in a way that stings we are left wondering about their intentions.

We can try our hardest to not let the hurt feelings we experience bother us. We see that we need to acknowledge their heart’s concern.

There are moments, the “wounds from a friend can be trusted”, as it says in Proverbs 27:6. This is because the comments are completely communicated out of ignorance. The people we are counting on to be understanding are struggling to say whatever it is that can communicate their care. Their comments, however, just come out in a way that at times results in being interpreted all wrong.

It was 1993 when I received a diagnosis of rheumatoid arthritis my life changed rapidly. Those individuals at my church body and people at work felt no reluctance in telling me their their thoughts about my diagnosis of rheumatoid arthritis –which I was without a doubt not old enough to have–in their ‘expert’ opinion.

As a 24-year-old young woman, living over a thousand miles away from the place I grew up, the decisions I was forced into making about the treatment choices felt serious and overwhelming. I meticulously poured through brochures and paperwork researching medications, therapies and alternative treatments.

I went out of my way to see specialized doctors, for example rheumatologists. I compared different drugs and their instant side effects, with the long-term results of choosing not to use certain medication.

The mixed up advice from people who had never even heard of my chronic condition felt like a personal attack on my level of common sense. I know that may sound as though I was too sensitive, however. . . that is how it felt. My emotional side thought “The nerve!’

I must admit, of those who casually shared ignorant statements, it is those that had their opinions about my genuineness of my faith that hurt the most.

Have you experienced what Proverbs 18:2 says is a friend that “finds no pleasure in understanding but delights in airing his own opinions”?

When I was first diagnosed with rheumatoid arthritis, seeking examples from others who had traveled this unexpected road, I researched the inspiring autobiographies of Christians who who had endured physically suffering, Joni Eareckson Tada and Dave Dravecky.

They have, and continue to hear, the same sort of comments and even insults, that I was told. I gripped onto the oath that the Lord was the only one who really saw my heart.

If strangers were able to share these heroes in the ministry of suffering regarding how they didn’t have enough faith to be totally be given the gift of healing, what made me believe that I was exempt from similar criticisms and skepticism? If you find yourself wondering if something is not right with you due to the fact that people tell you don’t have enough faith to be healed, guess what? You are not alone.

In addition, I’ve heard some rather derogatory comments, and it’s always a struggle to simply smile and say, “I appreciate your concern, but I don’t necessarily agree.”

Many times it feels as though everyone who is well, desires me to have a ministry for those who are healed or a ministry that tries to “get people healed” by demanding a certain formula that they think God uses.

Personally, I just don’t have a passion for a ministry that focuses solely on healing. Many of those already are available. And I would be thrilled to wake up tomorrow and find I was healed, but the zeal that God has called my heart to is a ministry where people are today– usually, still sick. I want to meet each individual wherever they are before they have experienced a healing. I want to be a part of in the ministry that stands by them if healing doesn’t comes on this side of heaven.

Through the organization I began in 1996, Rest Ministries, for the chronically ill I have been honored to have the chance to speak and exhibit to many audiences, including pastors and chaplains, as well as those coping with invisible disabilities. Always, however, I am vulnerable to being told, “If you had more faith you would get healed.”

Frequently people glance over the table of our resources and books and then say, “This is wonderful, but you should try ‘fill-in-the-blank-alternative-treatment-here,’ and then you would be healed, and then that could be your more helpful ministry!”

In some strange way, though I still to get upset with the limitations and a generation of my disease, I am just beginning to understand the Bible verse 1 Peter 4:13. It speaks of considering it “pure joy to suffer for Christ.” If this means that I will have to “walk the walk” (or someday wheel?), then I will do so.

And I am not alone in this regard. You may find many people with chronic visible and invisible disabilities confess that though they are not especially “joyful” about their circumstances they have discovered that life is more meaningful, even though bittersweet, due to the suffering they have experienced.

Yes. . . I hate pain! And I get tired of it. God does give us grace and endurance to get through another 24 hours. He also provided the Israelites manna so they could live one more day, solely depending on Him. I confess, like the Israelites, I have my moments I want to complain, “L-o-o-r-d, I’m tired of the manna!”

One will find, however, that as he grows closer to God the remarks people say will become much less important and they will slide off of us much easier than we ever imagine. Although there are days where it feels like people are purposely trying to say things that will bring us emotional pain, most often the pain they cause is not even known to them. Grow close to the Father and your faith in man will grow less and the emotions will not be so painful.

Does it feel like no one understands what you are going through? Author, Lisa Copen shares in her book “Why Can’t I Make People Understand?” more ways to get past the need for friends to empathize. Discover it today so your life can be overflow with joy, not frustration.

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May 6, 2010

How Twitter Can Help Your Health Awareness Event

Twitter is one of the most successful of sharing with anyone in the world the causes that you believe are important.

If you live with a chronic illness or have an interest in a specific health condition, you will find that Twitter can be one of the most exciting ways to let others know about it, even if you have little or no budget.

Here are 16 things to know if you plan to use Twitter for your health awareness campaign:

Setting up your Twitter account to be successful from the beginning:

[1] Decide if you will be using your personal account (with your name for example) or an account that is more geared just toward the illness campaign. People involved in the campaign may not be interested in your personal Twitters. To increase your Twitter followers it is important to have a Twitter account that describes your cause and uses your logo.

[2] Design an informative background for your Twitter account that is colorful and includes all of your important information, such as event dates, hashtags, and contact information. You can upload your image under “settings.” Most Twitter pages have a background image that does not take into consideration that most of it is hidden behind the Twitter messages. The best image is 540 pixels high x 540 pixels wide. Your information to be read should be in the first left 124 pixels.

[3] When planning an event or cause, come up with an effective hashtag and don’t be afraid to tell everyone to use it when referring to your specific event in their tweets. This way anyone can quickly search Twitter and find tweets specific to your cause. Remember, the shorter the better! In case you don’t know, hashtags are the # symbol you see in front of words like #illness. The hashtag for National Invisible Chronic Illness Awareness Week, for example, is #iiwk09. This is an annual event, so by adding the year onto the end of the tag, one can find information for any particular year.

[4] If you want people to retweet your tweets, take the time to write and research to find tweets that they will want to comment on or retweet. Experiment, as you may be surprised what people find worthy of action. Tweets can be statistics, quotes, proverbs, or facts. Link to blogs or articles, or even tweet lists For example, tweet one “step” or “how to” tip a day from your list.

[5] When preparing your Tweets keep them as short as possible so that people can retweet them without cutting anything off. You want people to be able to write RT(space)@YOURNAME. How many characters does that equal for you? Plus, leave room for a short link and a hashtag.

[6] When you post a link in your twitter post, be sure to utilize a link shortening service. I have followed another expert’s advice and usually put my link at the front of the tweet, so it’s not cut off when people retweet it and comment on it.

Twitter etiquette you should know:

[7] Start following fellow nonprofits that have Twitter accounts set up. Find others who have the illness of your cause and follow them. But remember to engage in conversation. Don’t just post and then ignore comments.

[8] Be generous by retweeting other posts if the information will be beneficial to your audience. If you are following people you admire who are experts in their area, it won’t be difficult to find interesting posts to retweet.

[9] Jump in to participating in Friday Follows, recommended other Twitter-ers who tweet on your topic. And don’t forget to say thank you when people add you to their Friday Follows or retweet your messages. If you have hundreds of these it may not be possible, but do your best to publicly say thanks by making a post with their Twitter names.

[10] There are many Twitter applications that can give you the ability to set up a direct message to automatically be sent to anyone who follows you. Take advantage of this by offering a link to a helpful article, a free download, or some other perk. Don’t waste people’s time by just saying, “Thanks for the follow.”

How you can improve the worth of your twitter posts and increase the number of followers:

[11] Considering taking your best tweets and turning them into an article for your blog or article directories.

[12] Through Twitter software applications you can post your tweets to your blog automatically, or have your blog notify Twitter automatically whenever you have posted a new blog.

[13] Some people may be interested in helping your cause by retweeting your facts or other tweets, but they miss a few. Make it easy by posting all of your tweets in one place on your blog. Some Twitter applications can automatically post them all to a “category” on your blog. You can use the TweetMeme application on your blog if you want visitors to also view how many others are retweeting your tweets.

[14] Give away prizes to those who follow or retweet, but make sure the prize is not a bribe to increase your number of followers (who may not even be interested in the content) but rather a way to say thanks.

[15] Post your Twitter feed everywhere you can including other social networks: your blog, web site, profiles at Facebook, My Space, Plaxo, etc.

[16] Don’t forget to let everyone know your Twitter address! Post it in your email signature, on your blog’s sidebar, your web address footer, and beside “contact us.” This is one of the simplest ways for people to be more invested in your cause than if they just had your email, but not as much of commitment as signing up for your newsletter yet.

Twitter is one of the fastest growing ways to communicate with people today as major news journalists, and even the president are joining in. Even if you are not yet entirely committed to Twittering daily, at the very least set up an account for your cause and start following a few leaders in your field and gradually learn how it could be a benefit to add to your communication tools.

Lisa Copen is the person behind National Invisible Illness Awareness Week and author of the amazing little book that is changing lives, Beyond Casseroles: 505 Ways to Encourage a Chronically Ill Friend.

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