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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April 29, 2010

Study Shows Prayer Determines Church Group’s Success Rate

Filed under: Christian Illness Ministry — Rest Ministries @ 2:35 am

Enthusiasm can be high when you first start putting your plans together to start a small group ministry for those with chronic illness, but even the best of intentions can actually lead to a decrease in prayer time.

You may have the best, most organized plans, but without a daily conversation and walk with the Lord, you may discover you have feelings of being overwhelmed and stressed out about the group, rather than being at peace about your decision.

A study was done by a Small Groups web site and here are their findings regarding prayer:

They found that 83% of leaders who had a strong prayer life reported that at least one person who attended their support group came to know Jesus through the influence of the group. But of those leaders who had what they defined a weak prayer life, only 19% of groups had a member that came to know Christ.

Leaders with a strong prayer life have groups have more than four times the evangelistic impact as groups led by leaders with a weak prayer life.

Are you familiar with the scripture John 15:5? It says, ‘I am the vine; you are the branches. If a man remains in Me and I in him, he will bear much fruit; apart from Me you can do nothing.’

Regardless of what tips you may discover from friends, church small group trainings, books, or seminary and congregational care resources, remember to keep prayer always the first priority.

Note that the scripture does not say, ‘I am the vine, you are the branches and he who gather together the most resources, seminary resources, books, funds and claims the most mentors, time, and energy will bear the most fruit.’

With the gift of prayer, God has equipped you with the most precious and essential tool to do the work that He has prepared in advance for you to do (Ephesians 2:10).

Chronic illness ministry support groups in a Christian environment are a special group where people can find encouragement for this path they are on. Eventually they can become disciples themselves, encouraging others who are going through moments of suffering.

Let’s set our sights on creating loving environments of small group illness ministries where people can find comfort despite the pain.We can aim beyond just a typical support group secular setting where people sit around and compare notes on the horrors of chronic illnesses. It’s not supportive or loving to try to discredit the pain people are in by saying we are in more pain.

Instead, together, let’s create an oasis where people can feel safe and comfortable in sharing the daily challenges of their condition and what gets them through it. It can be a place where God and illness can be spoken of in the same room as we seek to find hope in the eternal when our temporary circumstances leave much to be desired.

You may be wondering where to start if you are considering leading a small group ministry for those with chronic illness. The first place to start is with prayer.

Where to start after you have prayed? Get How to Start a Chronic Illness Small Group Ministry, a new book by Lisa Copen, founder of Rest Ministries. 320-pages of step by step instructions from passion to implementation.

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April 16, 2010

Starting a Small Group? Who Will Come?

by Lisa Copen

As you begin to decide on the logistics of your support group, one of the first things to consider is who you would prefer to actually attend.

For example:

– Will your group serve men or women? Adults or teenagers? Or all of the above?

– Can you see your group being helpful for those who have just been diagnosed as well as people who have lived with an illness for decades?

– Do you feel comfortable serving seniors who live at home independently, as well as seniors who reside in assisted living?

– Don’t forget about the many people who live by themselves, plus, those who have large families.

– Will your group be an encouragement to those people who have caregivers in a paid position, as well as those who have caregivers that are family members?

– Will the group serve people who have very limited abilities and are bedridden a great deal of time, as well as those who are able to work full-time outside the home? People’s abilities will vary to the extreme and perhaps change frequently.

– Will there be something beneficial from your group for parents of very young children and those whose children are now in adulthood?

– Do you feel comfortable serving both those who are very financially blessed, as well as those who are living day-to-day on minimum disability assistance?

– Do you feel equipped to serve people who live with a chronic illness, but who also fill a caregiver role for someone such as an elderly parent or a child who lives with disabilities?

– When considering if your small group will have a Christian foundation, are people of any religious background welcome to check it out?

– Will your group membership be open to anyone at any time, or will you have only certain times of the year that new members can join?

As you can see, when it comes to chronic illness and lifestyle, there is no such thing as “typical.”

You may find yourself ministering to a man who is in his twenties. He looks perfectly healthy and even competed in your community marathon last year, but he has recently been diagnosed with fibromyalgia (FM or FMS). Perhaps he is going through the emotions of not being able to do what he once did and being told he over did his training last year-and so it’s his fault he is now ill. He may even be teased that fibromyalgia is that “woman’s disease.”

And sitting in a chair next to her may be a man who was just diagnosed with a seizure disorder last week and he is confused and angry about not only his disease, but what is immediately being taken away, such as his ability to drive, coach his son’s T-ball team, and sometimes even perform his job.

Another factor to note: If you do not feel comfortable facilitating some people, you do have the privilege of announcing who the group is actually for at the beginning, since you are the leader. Although you may not wish to exclude anyone, many women, for example, prefer to lead a group for women only. Since there can be a great deal of shared intimacy and vulnerabilities within a support group atmosphere, and the divorce rate among the chronically ill is already high, you may wish to have preventative maintenance and not set up any awkward moments. It is important to remain confident in where your strengths and comfort zones reside.

As you are leading your group you don’t worry about specifically addressing every situation that has been mentioned above, however, it is vital to keep in mind the variety of backgrounds and experiences that those who are attending your group bring with them when they enter the room.

The more efficiently you are able to understand the personalities, the background, and the experiences of those attending your group, the easier it will be to facilitate the group. You will not only be able to just encourage the members who attend, but also point out their strengths, and in turn, help them pass that encouragement onto others.

If you are a small group leader or thinking of starting a group, don’t miss Lisa Copen’s new book, “How to Start a Chronic Illness Small Group Ministry.” Over 300 pages with step-by-step instructions on how to write a vision statement, promotion and attendance tips to what to do when everyone just wants to complain. Discover hundreds of resources at Rest Ministries .

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April 14, 2010

5 Priorities After a New Illness Diagnosis

by Lisa Copen

I remember the day my life shifted dramatically. I had had weeks of symptoms of swollen joints and inflammation beyond anything I’d ever experienced or even knew existed. My doctor called my place of work and said the rheumatoid factor was positive, which meant that at the age of 24, I most likely had an illness called rheumatoid arthritis. I bravely asked her “On a scale of 1 to 10, 10 being normal, what will my life be like?” She avoided the question, not wanting to give me a specific number. But I like to know what I’m up against and so when I asked her again she reluctantly responded “If you are lucky, perhaps a six.”

Now I knew: at the age of 24, my life would perhaps never return to where it was “before illness.” The word “normal” would be redefined. Simple activities like staying out late with friends, driving my car, sitting on the sand at the beach, or carrying a cup of coffee, would become an event and sometimes one I would be unable to complete. The carefree attitude and lifestyle that I had lived would always be overshadowed within the fog of chronic disease.

Recently, I received an e-mail from a woman who I went to small high school with of about 300 students–over 25 years ago. She had recently been diagnosed with rheumatoid arthritis, and while surfing the Internet to find information and encouragement, she stumbled upon Rest Ministries website and discovered that I was the founder.

We exchanged e-mails a few times and it is my hope that she found them encouraging. When I reflect on what I would’ve liked to have heard from someone who has lived with a chronic illness for years, upon my new diagnosis, these are the five things I find of most value to pass along.

[1] Contact the national organization or foundation that supports people who live with your chronic condition and explain to them that you have recently been diagnosed and would like their most basic information for someone with your illness. They may send you something in the mail, or direct you to your website. The important thing is to sign up for a membership to be on their mailing list.

Although you might feel as though you have not yet accepted the fact that this illness may be a long-term part of your life, it is important to go ahead and sign up for a membership to be on their mailing list. You can always toss the information or save it for later when you are ready to emotionally process it. But you will find that they will have the most current and objective information regarding scientific research and treatment options. As your doctor suggests medications for you to take, and you are reading the long list of side effects–and maybe questioning their judgment–these organizations will be your best source of information.

[2] Read about your disease, but know when to stop. Unless you have some rare disorder, you will find there is no shortage of information about your illness through millions of books, websites, podcasts, magazines, and more. It’s wise to glance over health and illness organization websites so that you have a good selection of credible resources to go to when you are reading for additional information.

You will want to know what some of the symptoms of your disease are so that if they do occur you will be aware that it is part of your chronic illness and not a separate chronic condition. However, don’t be tempted to try to read everything you can get your hands on, as it will simply depress you! Many of the symptoms that people describe may not actually be a part of your illness experience. You don’t want to get too depressed or discouraged over things you may not ever have to deal with!

[3] Don’t lose hope. As with my illness, rheumatoid arthritis, and most others, there are daily scientific discoveries that can change the of the disease. I have lived with rheumatoid arthritis for 16 years and just recently had four joints replaced in my left hand. My medical team, which includes a hand surgeon, rheumatologist, and physical therapist, all have commented that they rarely see these kinds of surgeries anymore due to the new family of drugs in the last 10 years that has slowed down the progressiveness and destruction of the disease.

Even if there is not an immediate cure, as we scientifically grow closer to being able to know our exact DNA, we will be able to pinpoint which medication will best treat our disease, without having to jump from one medication to another, losing months and years sometimes of our health, in order to find which one works best. Hope and a positive outlook will have a profound effect on your disease and your life. So don’t give up and assume that your illness will be disabling.

[4] Think about who you would like in your life to be able to talk to about what you are emotionally and spiritually experiencing due to the recent diagnosis. The person may be someone you meet in an online forum for your disease, it could be a pastor, mentor, counselor, or even a good friend who is able to listen without trying to fix it. The most important thing is that you have an oasis where you can share what you are experiencing without feeling like you may be judged or where you will receive ignorant comments such as “no pain, no gain.” Check out your local support groups for your illness, or other support environments such as HopeKeepers, which is a unique small group Christian support environment for those who live with illness or pain.

Also, consider your personality and how you are best encouraged. Would you feel most refreshed by sharing what you are going through with just a friend, one-on-one, at a coffeehouse? Or are you homebound, and signing onto a website every day to receive encouragement and prayer would be beneficial? Remember, whatever works best for you at this time, may not best meet your needs in six months, so do not feel like you are stuck with a particular group or mention. Be willing to try new forms of support to find which best works for you.

[5] Ask yourself “What foundation do I have in my life that will help me through the difficulties that I will be facing?” Even if your illness does not progress rapidly, the daily aches and pains, as well as the emotional roller coaster and spiritual “why?” questions you will have, will leave you searching for a deeper meaning in life than simply solving your problem with a cup of hot tea. As a Christian myself, I honestly do not know how people live each day with a chronic exasperating illness who do not know the Lord.

During those times this is what holds me together: knowing that my pain is never wasted; that God is ultimately in control and none of my circumstances surprise Him; and that He has a plan for my life despite the limitations I face and the goals I have that I may never meet. If you are not a spiritual person, when you are facing those middle-of-the-night-blues I encourage you to look up any Bible websites like Bible Gateway and read the Psalms. You may be pleasantly surprised to find that most people who live during biblical times face hardships, depression, doubts, and yes, illnesses.

Feeling overwhelmed and misunderstood? Don’t miss Lisa Copen’s book, Why Cant I Make People Understand? Order at WhyCantIMakePeopleUnderstand.com and learn why you feel the way you do and what you can do about it to make living with a chronic illness easier.

So to summarize, choose your information wisely, set personal boundaries for how much information you will read, keep hope, find a support system, and then search for that which will get you through the darkest of times when the information and people you have relied on disappoint you. You must discover a purpose in the pain that is greater than that which our world will tell you. Don’t ever put life on hold. As the late John Lennon once said, “Life is what happens to you while you’re busy making other plans.”

Feeling overwhelmed and misunderstood? Don’t miss Lisa Copen’s book, Why Cant I Make People Understand? Order at WhyCantIMakePeopleUnderstand.com and learn why you feel the way you do and what you can do about it to make living with a chronic illness easier.

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October 11, 2009

Chronic Illness: How Much Do You Share with Your Spouse?

couple-cuddle“I feel like there are thumb tacks in my bed!” I say to my husband as he crawls into the other side of our bed. “I know there is nothing there, but I just feel bruised all over.”

“I’m sorry,” he offers with a sympathetic voice, but there is little else he can do.

“Actually, I sort of feel nauseous too,” I share. “It’s probably just the drugs. I wonder if I should eat something or if that would make it worse. I’m sure it will pass if I can just get to sleep.” I look over and he is already starting to snore.

For many of us, we have a deep friendship with our spouse. If we share a good relationship we want to share our deepest thoughts that are running through our brain. And even if our relationship isn’t as good as it once was, we may feel that by explaining a bit about the pain that we are experiencing, our spouse may actually understand our moodiness better and be a bit more loving.

Although we don’t want to burden them by constantly sharing about our aches and pains, when we are hurting there is a desire to be heard and have our feelings validated. By talking out loud about what we are feeling, it somehow makes the pain real. It’s no longer “all in our head.”

In the Bible we are told “Carry each others burdens, and in this way you will fulfill the law of Christ” (Galatians 6:2). Our spouse can play an important role in helping us cope with our illness by carrying some of the burden, but it’s wrong of us to assume that our spouse should be fully responsible for carrying it. We need to take our burden to the Lord and talk to Him about it, as well as find a close friend we can confide in.

Your spouse may not be in physical pain but he or she is still grieving many losses that we need to acknowledge can be just as emotional as our losses. Perhaps his coping with the loss of watching you lose your abilities to do things you love; he misses the fun things you used to do together as a couple that are now too physically demanding for you to do; he may be frustrated that even his hugs can be painful for you! Counselors have agreed that they typically see the same top three problems in marriages: money, time and physical intimacy.

Is your marriage suffering from changes in all three areas? Illness can add a burden to each of these. How can we learn how to “share our burdens” in our marriage relationship, and yet also realize how to set reasonable limitations on our expectations of what our spouse should handle?

Be a team with your spouse

Remember that the “team” is you and your spouse up against the illness. The illness is the third party, not your spouse. Yes, you will often feel that your spouse is the spectator in your life as you go through the ups and downs of your illness, but make him a part of fighting this battle with you in a way that he is most comfortable.

Ask your spouse if you can share some information about your illness so he has a better idea of what you are going through, but don’t overwhelm him. If he is willing to attend a few doctors appointments with you, let him, and give him time to ask the doctor his own questions. For example, giving him a brochure may be better than handing him a 250-page book. If he listens to podcasts, find some that would be beneficial for him to listen to. Acknowledge that there may be role or responsibility shifts in the marriage due to the illness. Be open about what you are struggling with and where you need help. For example, if you can no longer scrub that bathroom but, let him know before the grime gets out of hand.

Connie Kennemer who lives with multiple sclerosis shares, “I am not as mobile as I used to be and often ask more of my husband. ‘Can you work at home this afternoon? Why do you have to go to another meeting?’ etc. How much should he accommodate me because my body is changing? He doesn’t always know when to stop and encourage me to try things myself. This is a constant challenge.”

Reasonable expectations are a must

We often marry someone who has our opposite personality style. If you need to read every article about your illness, but your spouse doesn’t, it may simply be because your spouse has a more laissez faire attitude, not because he doesn’t care. His response to a crisis may appear to be nonchalant on the outside, but it doesn’t mean he is not worried and concerned about you.

On the other hand, maybe you take things as they come and don’t want to get on the internet and read every detail about the symptoms you may have. Your spouse may wonder why you aren’t more interested in finding out how to best treat (and even cure) this disease. He may go as far as to accuse you of being in denial about your illness. He may want to see you be more passionate about being healed than you are. A wonderful book that will help you smooth out some of your communication is “Men are Like Waffles, Women are Like Spaghetti” by Bill and Pam Farrell.

Have information about your illness available for when he is open to reading about it

If you are having a conversation and you want to explain more about how you are feeling, or details about the illness itself, you may want to have books with sticky notes on the pages you think he’s find most helpful. Or bookmark pages you can read together and then discuss. Connie says, “After ten years of living with MS, I am past the whiney stage, but Rex sometimes holds back; that’s when I need to ask him more questions about his feelings.”

Find ways to share about embarrassing parts of the illness

There are some parts of illness that are just downright embarrassing. For example, if you attend an event with your spouse, you may end up in the bathroom for eighty percent of the show. You need to let your spouse know this is part of the disease. But if you don’t want to talk about all those details it’s okay. He probably doesn’t really want to hear about them either. Most health organizations have brochures that list the symptoms of the disease. You can hand him one of these and say something like, “I’m trying to cope with some of the more personal matters of this disease right now, and I don’t really want to sit around and discuss them, but I also want you to be aware of them. This brochure explains them in case you are interested.”

Look for other ways to vent besides always dumping on your spouse

“I realized that I banked my frustrations of pain throughout the day and then ‘threw’ them at my husband when he walked through the door,” shares Cheryl, who lives with chronic fatigue syndrome. “I was setting the tone for our entire evening. I felt better getting it off my chest, but he felt worse, and it lasted all night. I could tell he was beginning to dread walking through the door.”

To rectify this Cheryl started to put aside the last couple of hours each day before her spouse came home write in her journal, pray or do something she enjoyed that was calming. “Writing in my journal gave me the chance to express my frustrations; prayer really began to minimize the negativity too. My husband quickly noticed a difference and it’s made our relationship so much stronger.”

Get involved in some new hobbies

How do you spend your time? A lot of time we may be talking about our illness because we don’t have much more going on in our lives other than trips to the doctors or to the lab. Get involved in something else, even if it’s just a couple hours a week. For example, volunteer to be on a prayer chain, start reading through the classic books you’ve always wanted to read, put together photo albums for your grandchildren. You will soon discover that even you aren’t that interested in talking about your illness when you have much more exciting things to share about.

Conclusion

So, the real question is how much is too much! There is no perfect answer, because it’s different for each person and each marriage. Practice being objective. How often are you bringing up your illness? How do you benefit from talking about it more often than necessary? Do you need validation? Understanding? Actual physical help with tasks? It’s not wrong to admit that maybe there are days we really do just want the attention from our spouse and this seems to be the only way to get it! How can we get some of these needs filled by God instead of our spouse? How is it negatively impacting your life, or those around you, by discussing it all the time?

And then take a moment to really ask yourself “Is there a better, more creative way that I can create intimacy with my spouse, other than just complaining about each ache and pain? What activities can I still share that could help us grow closer together?”

And then when you want to share about your pain, send up a prayer to the Lord beforehand: “Lord, I don’t want to burden anyone else with something they can’t fix, and I really need a hug from you right now. I know how much my spouse cares about me; please give me the wisdom to know when to ask for help and comfort from him/her and when to come only to You and ask you to fulfill all of my emotional needs.”

Don’t miss other articles and important support while living with chronic illness or pain visit Rest Ministries so you don’t miss our fresh content and be entered for our monthly giveaway. Lisa Copen is the director of Rest Ministries, author of “Beyond Casseroles: 505 Ways to Encourage a Chronically Ill Friend” and founder of National Invisible chronic illness Awareness Week.

July 16, 2009

You are Too Young to Be That Sick!

Typisches Röntgenbild einer Rheumatoiden Arthr...
Image via Wikipedia

At the age of twenty-four, a thousand miles away from my family, living in a new city, I was diagnosed with rheumatoid arthritis. Over a period of four weeks and about eight doctor’s visits, I finally found a physician who listened to me explain my symptoms and in less than two days I had a diagnosis.

Despite the terms “chronic” and “forever” I felt relieved to know the label that described my chronic pain. Few of my friends, however, shared my enthusiasm for a diagnosis. The managers at my office were more concerned about the fact that I wasn’t wearing heels to work anymore, making me look less professional.

They quickly threw comments about such as “You’re too young to feel this bad!” Most people were confused about the difference between rheumatoid arthritis and typical degenerative arthritis that our grandparents may suffer from. They ignorantly said things like, “There is no way that you can have arthritis yet.” Those that did try to offer sympathy compared my fatigued and pain to their sports injuries. “Yeah, I have some arthritis in my knee from football. You just have to keep pushing through the pain.” It wasn’t unusual to see their comments accompanied by the wave of their hand or their rolling eyes.

When you are faced with a chronic illness in your twenties, all of the typical decisions you should be making are quickly put on hold. Up until now, you were considering what kind of education to pursue, your career aspirations, relationships, and even where you will live. All these are put aside, however, as you are forced to make immediate decisions that impact the rest of your life. Things like how well you accept (or do not) accept the diagnosis of your condition, which medications to try, when side effects are worth the risk and when they are not, and how to find the right physician. While friends are deciding which party to go to we’re at home trying to make sense out of our latest lab test results, weighing our options for alternative treatments, and deciding to have a good cry or just go to bed and hold back the tears one more night.

I did my best to make well thought out decisions, each of them based on thorough research, some instinct, and of course, “worse case scenario” situations. So when I heard someone flippantly tell me, “You’re too young to be diagnosed with that illness” it felt like a slap to my intelligence. I recognized it as a passing ignorant comment, but it it my heart deep anyway. Did they assume that I was ignorant or that I too easily accepted the doctor’s diagnosis? They comments implied that I wasn’t being assertive enough and that I needed to go back to the doctor to get the “real” diagnosis (of an illness that could be cured in a few weeks with just a pill.) I couldn’t really be that sick, after all, because I “looked so good.”

Laurie Edwards, a woman who grew up with a chronic illness as a child is the author of ‘Life Disrupted: Getting Real About Chronic Illness in Your Twenties and Thirties,’ In her book she explains, “However infuriating and irrational such comments are, they only have the power to define or validate our conditions if we allow that to happen. There are all sorts of reasons why people find it easy to scorn or deny illness, especially in younger people who ‘should’ look and act healthy – fear, ignorance, intolerance, to name some.”

The saturation of advertisements on television and in magazine for prescription medications has helped legitimize some illness, such as rheumatoid arthritis and fibromyalgia. There are downsides, however. For example, everyone considers her self an expert on the, plus they make their assumptions about how well the drugs work based on the ads. The advertisements show people with debilitating illnesses (healthy models, actually) who are astonishingly now able to water ski or join their kids on 300-foot water slides. While a certain percentage of people may experience remission, the majority of us are happy to be able to get up out of bed without assistance, get dressed, and drive to the grocery store. Ads and commercials fail to alert people that though an illness may be temporarily controlled, they are usually associated with immense daily chronic pain.

With any chronic illness, most of which are invisible illnesses, there will be people who will be skeptical about how much your life is impacted by your condition. When you cope with an illness while in your twenties or thirties, and you “look healthy” they will have even more hurdles to jump over to get the fact that for you to feel better requires more than an attitude adjustment or a daily walking regimen.

Instant download of 200 Ways to Encourage a Chronically Ill Friend from “Beyond Casseroles” by Lisa Copen when you signup for HopeNotes invisible illness ezine at Rest Ministries. Lisa is the coordinator of Invisible Illness Awareness

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July 13, 2009

10 Reasons When it Makes Good Sense to Fire Your Doctor

Police Clipboard showing several compartments ...
Image via Wikipedia

by Lisa Copen

We will never find the perfect doctor, as they are all human and none of them are perfect. It comes as no surprise to most of us that they call their profession “the practice of medicine.” One of the leading causes of death and injury in the United States is medical mistakes.

The Institute of Medicine calculates that, due to medical mistakes, anywhere from 44,000 to 98,000 people actually die in hospitals in the U.S. each year. This is more than from motor vehicle accidents or breast cancer.

Regardless of whether you are generally healthy, or live with a chronic illness, you still need a physician you can trust. Though an occasional small mistake may occur, it is especially important that you have a doctor who is eager to be part of your medical team for both short-term and long-term treatment.

Are there some sure signs you shouldn’t listen to your doctor and you should seek a second opinion, or maybe even shop around for a new physician? Definitely!

1. Your doctor does not listen to all of your symptoms or ask questions about them. He is quick to write down his interpretation when you have not fully been able to explain yourself.

2. Your doctor is determined to prescribe medications that have just been approved by the F.D.A., even though you are hesitant about trying something new. He doesn’t explain what the medication will treat, and why it’s important for your condition. He doesn’t explain short or long term side effects or any plan to get you off of it. Promotional items for these medications are visible around the office, from notepads to clocks.

3. Your doctor seems to know a lesser amount of information about your condition that you do. You often feel like your appointments are just times when you show up and inform him of your well-being and what is new about your condition, and he takes notes.

4. Your doctor appears to lack confidence about his ability to care for you effectively, seldom giving you medical advice or directions. Instead, he seems to tell you to do whatever you believe is best or asks, “Well, what do you think we should do in this case?”

5. Your doctor is quick to order tests or procedures that could impact your current health or your chronic illness in a negative way. He forgets that intrusive procedures that may be minor for some people could cause set backs in your illness. The best physician always keeps your whole body and condition in mind, not just the part he specializes in.

6. Your doctor seems to give you that look like he is humoring you. When you describe something you read, or ask a question about a new treatment you have heard about, he looks at you with skepticism and a smile and then writes some notes. It feels condescending.

7. Your doctor isn’t open with you about the medical records he has kept about you. When you request copies of your records, he may be willing to fax them to another physician but seems to try to avoid you getting them into your hands. One reason it’s vital to be aware of what is in your medical records is in case you submit an application for disability aid at some time and social security disability review doctors wish to examine your records.

8. Your doctor is never available when you need him. When you have an emergency he cannot get you in for an appointment immediately. Your prescriptions aren’t refilled on time. He doesn’t call you back when you have an urgent situation and must page him.

9. Your doctor is doubtful that you are having the severity of pain that you describe to him. He is hesitant about prescribing you pain medication, even though your pain level justifies it and you have proven to be a responsible patient with your medications.

10. Your doctor is never open to consulting other medical professionals or faxing his notes over to your other physicians. He thinks he can solve all of your medical needs and feels threatened when you want to consult with another source, specialist, or someone else on your medical team.

A good doctor will listen to you as much as possible, take good notes, explain medications, and make you feel like you are part of your medical team in treating any conditions or symptoms you may have.

We may never find the perfect physician, and we may visit a few doctors who have been referred to us before we find the best fit for our medical needs and a good personality fit. But don’t sacrifice your well-being simply because you are afraid of hurting the feelings of a doctor by leaving him and seeking your care somewhere else.

Read Lisa’s newest book, Why Cant I Make People Understand? Order at WhyCantIMakePeopleUnderstand.com Subscribe to a great weekly ezine HopeNotes and download free 200 Ways to Encourage a Chronically Ill Friend. And tune in to Lisa’s weekly podcast at Hope Endures Radio at the web site. Lots of support is available.

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July 10, 2009

7 Outdoor BBQ Planning Ideas When You Are Ill or Tired

The grill saga
Image by kristiewells via Flickr

Whether you plan to serve steaks or hot dogs, having friends over for an evening of fun in your backyard doesn’t have to be overwhelming. Just because you may have a chronic illness doesn’t mean you have to stop entertaining. Here are seven quick tips to entertaining outside without the fuss.

It’s fun to look at magazines that have perfect patios all prepared to entertain guests, but go easy on your self! Here are 7 quick ways to have a fun backyard BBQ bash.

[1] Invite your guests with an emailed invitation service online. It’s fast, you can send it out to everyone in minutes and they can respond immediately. They can leave a comment or see who else is coming. Another perk is that you can list any item that would be helpful for other people to bring and when they RSVP they can choose one or more. It doesn’t have to be just food either; it can be yard games (remember lawn darts?); extra chairs, special music on an ipod, or even paper plates.

[2] To clean up, focus on the outside. You can avoid people trekking through the front door if you put up solar-powered tiki torches and some twinkle lights, making a festive path along side the house. Toss any of your junk piles in the house to the back bedroom, spiffy up the kitchen and wipe down everything in the bathroom. Put out room fragrances that scent your house to smell like the beach, dim the lights and turn on a bunch of battery-powered tea lights. They are festive, but you don’t have to worry about flames anywhere.

[3] Bring the inside out. Pull out blankets, pillows, lamps with extension cords, and table cloths to make your deck or patio comforting. If you can do it easily, choose a theme.

[4] For food, decide what foods you could buy pre-made and then make them personalized. For example you can buy bulk potato salad or baked beans. Add chopped up celery, boiled eggs, and then sprinkle paprika on your potato salad. Add big pieces of bacon to your baked beans. For your meat, choose something simple where everyone doesn’t have to have it cooked their way. Ask a spouse or friend to grill, or grill in advance and warm it up on the grill at the end. You can also have an item like salmon. Wrap it in foil with herbs and oils and steam on the grill. Use some smoke-flavored wood chips to keep everyone drooling from the scent.

[5] Use paper plates and utensils. There are lots of bright colors at the dollar stores that will match your theme.

[6] Locate a teenager who wants to make $10 and let her be in charge of all the childrens entertainment. Set up the kids table and let them do some of their own activities, like making home-made ice cream and then having a toppings bar to choose from. Turn on the sprinkler or let them make a simple craft like sand art. If someone is feeling adventurous a treasure hunt prepared in advance is sure to be a hit with all ages.

[7] Skip fancy drinks, and provide a variety of sodas (don’t forget root beer and orange cream soda) and sparkling water. Have juice boxes for the kids. Throw a plastic table cloth over a wheel barrow or other bucket, dump in ice and arrange. Sit out a large self-serve container of unsweetened ice tea with some ice cubes pre-made with black berries and mint leaves inside for a fancy effect.

Lastly, don’t forget to sit and have a bit of conversation. Have fun! Don’t attempt to be the perfect hostess that no one sees. Relax and leave the clean up until the next day.

Lisa Copen is the founder of Invisible Chronic Illness Awareness Week held each year in Sept and featuring a 5-day virtual conference online. Follow II Week on Twitter for cool prizes and info. Blog about invisible illness on your site, be a featured guest blogger, meet others, read articles and lots more. Make a difference!

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June 2, 2009

5 Steps to Use Twitter as a Pain Log Tool

This article is free to reprint on your blog, ezine, web site, etc. Just leave everything “as is” including the resource box at the bottom. Thank you!

If chronic illness or pain is a part of your life, the odds are that at one point you have been requested by a physician to keep a log about your activities and pain levels, especially what led up to your pain being most intense. He may have suggested that you write down specific activities, your diet and exercise behaviors, and even your patterns of sleep.

If you have attempted to take this on and do it thoroughly, you know that it can be an overwhelming feeling to keep track of all of your activities and still maintain a sense of normal life. He can be extremely helpful, however, to you and your medical team, to have a written record of your activities, diet, etc. to help discover what is it is causing you the greatest pain. Was that extreme flare caused by a minor food allergy, the weather conditions, or that you were up all night with friends?

It is somewhat ironic that while we may find it a burdensome task to record what we are eating, who we are with, how much we slept, and how we are feeling, millions of people are doing this daily on Twitter. They write what they ate for lunch, if they have a migraine, and if they are up at 2 a.m. working. . . and they call it fun!

If you have a chronic illness, Twitter can be an amazing tool to use as a pain diary. This social networking tool has been successfully used to help people maintain logs on their diet, exercise, and even the commitment to stop smoking. Why should we not use it to keep accurate records of our chronic illness and pain levels?

Here are 5 steps to put this into place:

[1] Create an account at Twitter just for your chronic pain logs. If you already have a Twitter account, make a new one, and let it remain private. If you look under “settings” you will see the option to make your account private, meaning that you will have to approve any followers before anyone can see your Twitter account. Since this is private medical information, we recommend not approving anyone. If you are already Twittering this can seem a bit strange because you typically want to increase the number of followers.

[2] You are now ready to start writing your posts. You cannot write more than 140 characters, however, this keeps it a simple task and not too overwhelming. Feel free to use it in any way necessary, for example, submitting more than one post to describe a special circumstance. You can send posts from your cell phone, not just from the computer, so set up this option in your account to make the most of it.

[3] If you don’t know where to start, begin by posting about any major events or behaviors that are not part of your typical day, and how your body responded to them. For example, if you awake feeling horrible, ask yourself has the weather change significantly? Twitter the weather. Are you taking the same amount of medication as you typically do? Were you active or solitary yesterday? Post whatever information may be valuable to you and your medical team at any right in your treatment.

[4] Before you go to a doctor’s appointment, log on to your Twitter account and print out the posts if your doctor would like acopy. Highlight any major changes in your patterns of pain.

[5] If you already use twitter for personal or business reasons, consider using a service that will post to more than one account at a time so that you are regular tweets that share where you are and what you are doing can also post to your twitter chronic pain log without any additional effort.

The market for Twitter applications will continue to grow and there is no doubt that’s those considering medical Web 2.0 tools will come up with some fancy (and complicated) ways to record your pain levels. But for now you can have a thorough log of your chronic illness and pain levels in just minutes at no cost. You can’t beat that!

Lisa Copen is the founder of Invisible Illness Awareness Week held annually in Sept and featuring a free 5-day virtual conference w/ 20 seminars w/ 20 speakers. Follow II Week on Twitter for prizes and info. Blog about invisible illness on your site, be a featured guest blogger, meet others, read articles and lots more. Make a difference!

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