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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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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July 16, 2009

You are Too Young to Be That Sick!

Typisches Röntgenbild einer Rheumatoiden Arthr...
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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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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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March 27, 2009

Invisible Illness and Friends Who Don’t Get It: What to Do

by Lisa Copen

friends-women1If you live with an invisible illness, you may find the emotions of coping with people’s doubts about it can be harder to manage than the disease itself. Most of us with a chronic illness must eventually accept our condition. In order to live our best life, we need to educate ourselves about the disease and make well-researched decisions about treatment.

But we have no control over our loved ones when they choose not to accept our illness, or sometimes even acknowledge it. Their skepticism can last a lifetime and damage our self-worth and many relationships.

So, how do you cope with someone you love and care about won’t acknowledge the significance of your disease or even your illness at all? Here are four steps:

1. Go with it. Your life feels very serious right now, but don’t take your situation too seriously when around your friend. Unfortunately there is not a magical talk you can have that will make him instantly change his mind about your health situation. Most likely, the only way for him to rethink his perception of your illness is for him to observe you and your typical activities. Though your illness may be invisible, he may start to witness some visible symptoms. Perhaps you may have some new limitations, like being unable to walk a long distance; and rather than explaining what you can and cannot do, he might just see it.

2. Grow with it. Use this as a time to reflect on your own perceptions of people. When you are standing in line at the store and become irritated because “Surely no one here knows how hard it is just for me to stand!” think twice. Nearly 1 in 2 people in the USA have a chronic illness and about 96% of it is invisible, so the odds are that someone in line likely is experiencing the same chronic pain and fatigue. Also, what situations are your friends experiencing that you don’t understand? A child with a disability, the affair of a spouse, the loss of a job-all are life-altering and the odds are that your friends could use your empathy and support during this time.

3. Get over it. It is easy to obsess over the fact that no one understands what your daily chronic pain is like. Save yourself a lot of grief and don’t do it. We would all like a loved one to be able to slip inside are skin for twenty-four hours, but this level of understanding of our disease will never occur. If you began to resent people who don’t understand, soon all your friendships will be tainted. Do not take a friend’s lack of empathy personally, even though it feels personal. You cannot change someone’s mind; you can only control your own behavior, so make certain you have conversations that you won’t regret.

4. Get on with it. No material things in this world can replace relationships you have. If a loved one doesn’t acknowledge your illness, it’s true that the depth of your friendship will never be what it could be. But if the relationship is healthy in other ways, and one worth saving, you can keep it.

The odds are, at some point in your friend’s life, a health issue will occur and suddenly he will have a glimpse into what your life is like. Allow him to feel comfortable coming to you for support and encouragement and don’t use the opportunity to say, “I told you so.”

Go with it. Grow with it. Get over it. Get on with it.

Relationships with those who don’t understand the seriousness of your illness can exist. Be positive, accepting him for what he’s able to give to the relationship, and have reasonable expectations. Someday, this may prove to be one of your most special friendships.

This article is by Lisa Copen and can be reprinted at no cost, if you leave everything exactly “as is” including this footer. Get a free download of 200 Ways to Encourage a Chronically Ill Friend from “Beyond Casseroles” by Lisa Copen when you sign up to receive HopeNotes, Rest Ministries weekly ezine. Also be sure to check out Hope Endures, Rest Ministries weekly radio program every Tues and National Invisible Chronic Illness Awareness Week.

If you Twitter, be sure to check out Illness Twitters.

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