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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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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