The Ministry of Lisa Copen

Lisa Copen, Founder of Rest Ministries which serves the chronically ill, shares about mothering, illness, ministry and more.

Archive for life disrupted

Life Disrupted Book is Comforting and Realistic

I have read many books on how to cope or live successfully with a chronic illness, and I am eager to read the ones that specifically address the emotions behind an illness, not just the illness facts.

Even some of the best books, however, don’t resonate with me in a personal way. And then I read Laurie Edwards “Life Disrupted: Getting Real about Chronic Illness in Your Twenties and Thirties.”

Not only did I discover a gifted writer who discussed everything from humanizing hospitals to difficult diagnoses, but also one understood the emotional roller coaster that I’ve personally been on since being diagnosed with an invisible illness.

I was diagnosed with rheumatoid arthritis at the age of twenty-four, and ironically, I Laurie’s book was published the year that I turned forty. I wish I’d had this book years ago, but the impact the content had on me was not diminished in any way because of my age. I believe I related to the book even more, since I have already experienced so much of what Edwards writes about.

I’ve had an illness through college, dating, marriage and parenting. Through the past sixteen years I’ve trudged my way through all of these without a manual. Although I wouldn’t call Edward’s book a “how to” book, the validation that it provides through her own illness experiences, as well as her professional journalistic look at the sociology behind illness is exceptional.

It provides helpful professional information, with the hint of her diary between the lines. And I found a friend in one who copes with her illness best by burying herself in work. She writes, “As a college student I studied for finals and wrote newspaper articles from the ICU. In graduate school, I taught writing classes so fresh from being discharged that I still had a hospital bracelet on my arm. And all of this seemed perfectly reasonable to me. Why shouldn’t it?” (p. 142).

Edwards, a journalist by trade, (read her blog, “A Chronic Dose” here) is not afraid to put aside her professionalism and “get real” by talking about things that gals with illness can be concerned about, such as not being able to wear “cute shoes” or trying to find the energy to have a conversation with college friends. She even discusses gazing out a hospital window longingly looking at her dorm rooms. These things are a big deal when you are young. Emotionally we learn to live with illness. . . but it’s just so daily!

Edwards reminds us that those daily events of living with illness that can seem so significant are significant and not minor decisions.

How do we explain our illness when we are dating? When do we reveal it? How do we survive the embarrassment of healthcare situations that are a little more intimate than we would like? For example, when the home healthcare professional shows up is a bit too good-looking and close to our age? How do we become independent adults who care for our illness when our parents still want to be consulted? Is accepting our limitations giving in to our illness? How much of a caregiver should we allow our spouse to be? Should we have a baby?

Edwards has put together a wonderful book that will not only encourage and validate your emotions, but also inspire you to make positive changes in your own life. Her stories are never depressing (not an easy task for the best of writers) and self-pity is not in her vocabulary. Instead, her ability to laugh at her own circumstances, and share what she has learned on this journey so far, will encourage you, as her enthusiasm and joy for life rings through on ever page.

This is a book I will heartily recommend for years to come to people of all ages.

This review can be reprinted just cut out this sentence and leave this footer at the end. Thanks!

Lisa Copen is the founder of National Invisible Chronic Illness Awareness Week and author of “Beyond Casseroles: 505 Ways to Encourage a Chronically Ill Friend.” Her passion is serving people through her Christian ministry for those with chronic illness, Rest Ministries, Inc.

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ARTICLE: You’re Too Young to Be That Sick!

reprint No Pain, No Gain. You are too Young to Give in to Illness
by Lisa Copen

I was twenty-four years old, enthusiastically living in new city, finding my independence, careers, and following my heart when I became disabled in a period days and was eventually diagnosed with rheumatoid arthritis. It only took about four weeks, but with two visits to doctors a week, explaining my significant pain, it felt much longer.

Eventually I found a wonderful doctor of internal medicine who asked me about fifty questions. In about two days I had a diagnosis.woman1 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 flung the words, “You’re too young to feel so bad!”

They always confused rheumatoid arthritis as being related to typical arthritis their grandmothers suffered from, exclaiming, “You can’t have arthritis yet.” Some tried to sympathize, comparing my fatigued body to a sports injury they had dealt with. “Oh yeah, I have some arthritis on my knee from football. It’s not fun, but you just have to push through the pain.” Oftentimes, the comments were accompanied by the wave of a hand or the rolling eyes.

When you are diagnosed with a chronic illness while in your twenties, all typical decision making it thrown off schedule. This time in your life should be about choices for areas of education, a career, relationships, and even where you will live. Instead, all of these decisions are put on hold and you must make more life-changing choices – fast!

How you accept (or do not) accept the diagnosis? What medications should you take? What is the risk of side effects and are worth it? How do you find the best doctor? We get a fast education on how to read lab test results, what forms of alternative treatments to try, and even when to let yourself have a good cry versus when to just bite your lip and hold the tears back. I tried to make each decision based on thorough research, a bit of instinct, and “worse case scenario” situations.

So when I heard someone facetiously say, “You’re too young to have that illness” it felt like a slap in the face; as if they assumed I was too gullible to fight the doctor’s diagnosis and get “right one” that could be cured with a simple pill. I had to be incorrectly diagnosed, they assumed, because, after all, I “looked so good.”

lifedisruptedLaurie 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 ambush of advertising for prescription medicines has given the general public a small education on the fact that illnesses like rheumatoid arthritis and fibromyalgia are legitimate diseases. However, with this education, comes the feeling that everyone is an expert and their assumptions about various diseases are now based on what one sees in those same commercials.

For example, people with disabling illnesses can somehow be miraculously playing tennis or doing a marathon. While it’s true that a very small percentage of people may go into remission, or those just diagnosed may have favorable results, most of us are happy if we can get out of bed, get dressed and drive a car.

These commercials neglect to inform people that though an illness can be controlled somewhat, the person may still be in significant daily 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.

Get a free download of 200 Ways to Encourage a Chronically Ill Friend from “Beyond Casseroles” by Lisa Copen when you subscribe to HopeNotes ezine at Rest Ministries.  Lisa is the coordinator of  National Invisible Chronic Illness Awareness Week and host of Hope Endures Radio Podcast.