Reflections on Invisible Illness Awareness Week

Invisible Illness Awareness Week is nearly over. I am sitting at the computer reading through some of the many the blogs, articles, comments and more that people have been posting on their experiences facing a world who does not understand their pain.

Wow.

Truly. . . wow.

You have been refreshingly honest, yet hopeful.
You have shared your pain, but kept it in perspective.
You have shared your hurt feelings, but without bitterness.

I am in awe of all of you who have shared your hearts. . . and your hopes.

Here are a few of the things that I have read that touched me deeply.

• I get so depressed when people just don’t get why I don’t or can’t do things they are so unaware of the pain and exhaustion. So, I just have been trying to get the message out there [about Invisible Illness Awareness Week]!
• Between work, pain, fatigue and friends I’ve become rather isolated because of it all. But taking it just one day at a time.
• I have to take so many medicines, and I am so just so tired of the whole thing – that is until I read this article. After I wiped away the tears, I began to realize that I have to start to really ‘live’ with the fact that I will have to take some of the medications for the rest of my life – and that’s ok.
• I attempted suicide in 2004 because the burden of pain and emotional distress was too much for me to continue battling. It was an eye-opening experience where I learned that I had to live for my three children. They were the reason that I decided to call my husband and tell him what I had done. And it’s still because of them that I continue to push through day after day of pain. God spoke to me that night and said to me, “You have three babies downstairs.” That voice was so loud and clear and distinctly not mine. I knew it was Him telling me to live for them. So I did.

You may not be surprised about the pain that people feel, but I also hear so much hope.

You have shared things like. . .

• So I’m here to encourage all of you to live. There can be joyous moments in between the pain.
• The point is, think of things that you are capable of doing, that you really enjoy, and do them! Don’t let your pain take over your life! Your pain does not define you
• Coping with a crisis is and probably always will be hard. But with a better idea of what helps me push through I have more confidence in my ability to survive just about anything. You can do the same by coming up with an approach that suits your needs and tendencies before you need to cope with your next crisis.
• I shared the hurt I felt and explained how I did not want to feel pitied or be a burden. My family and friends reached out and I opened my heart and let them in. Something happened, something magical that brought us each closer to one another.

It is so easy for illness to cut the confidence, attack our personality, and end relationships. Each of you have said in some way, “I can accept this illness without allowing it to define me.”

This year’s theme has been “Deep Breath, Start Fresh,” and throughout the posts and the comments, you have put this theme into eloquent words that express this in beautiful ways.

My deepest thanks for all the ways you have helped those with invisible chronic illnesses and hidden pain this week. You have stepped forward, crossed the comfort zone, and shared your heart and your hope and you have made a significance difference.

Lisa Copen is the founder of Rest Ministries and she lives in San Diego with her husband and son. She is gradually learning how to balance motherhood, family, illness, and ministry, but she still knows it will be a lifetime lesson. You can see the books she has written, including, Why Can’t I Make People Understand? at the Rest Ministries shop.

Popularity: 10% [?]

Featured Workshops Today: Helpful Tools

Looking for some basic tools you can use to start making life easier today?

Marcia Ramsland, entertaining media guest expert, speaker, and professional organizer, is well known as “The Organizing Pro” for her practical tips and clever solutions in homes and offices. She shows us how to “Simplify Your Home and Housework.”

And then find out even more on “Getting Organized” and “Parenting When Ill” (We thought those went together well!)

For getting organized we are joined by Karen Whiting, a freelance writer and author of 10 Secrets of Success for Women: Time. If you listen to Marcia’s first presentation, you will hear what Lisa (the host) got from the show and then this next one she shares about what she put into place.

For our parenting segment, we have Jill Hart is founder of Christian Work at Home Moms and co-author of So You Want To Be a Work-At-Home Mom. She’s worked from home since 2000, starting a home-based business. Jill lives in Nebraska with her husband and 2 children. Jill lives with a chronic illness. We were to have Christine Miserandino, founder of www.butyoudontlooksick.com, but she was busy being a mom who had to get her daughter to the doctor!

Kelly Young is the mother 5 of children, 2 of whom are severely hearing impaired. She’s homeschooled for 17 years, led parenting classes and Bible studies, and mentored others. Kelly has lived with autoimmune diseases most of her life and has several diagnoses, including rheumatoid arthritis. She founded RA Warrior.

Would you like to make a few simple, inexpensive changes in your eating style and get much more healthy despite your illness? Super Foods for Super-Natural Health with Joanna Faillace is a terrific eye-opener to some of what goes into our mouth and doesn’t that can help us or hurt us. Joanna Faillace is a Certified Biblical Health Coach awarded to her in 2007 by Jordan Rubin’s Biblical Health Institute.

Joanna is also the TV Host for Super-Naturally Healthy Kids with Chef Joanna, a series of health cooking video shorts which is broadcast daily on TBN’s Smile of a Child Network. Joanna is also a keynote speaker for Thelma Wells’ Ready to Win Life Skills National Conferences. In addition, Joanna is the author of Super-Naturally Healthy Families Cookbook Devotional.

Thinking of applying for disability financial assistance? Now more than ever the government is cracking down on approving applications in the USA. Be sure to check out attorney Scott Davis’ workshops from both 2008 and 2009 on “Applying and Winning Disability Assistance.”

Find even more we’ve not shared this week in our archives at Blog Talk Radio Invisible Illness Week Conference Room.

This year instead of having a live virtual conference we are featuring some amazing workshops from past years. You can find them all here on Blog Talk Radio or, if you use itunes, enter “invisible illness” under “podcasts” and then download them to a music player to listen to anytime. >More instructions here

Popularity: 5% [?]

How to Get Some Sleep When the Pain Won’t Go Away!

Shari Smith

Since my original injury in September 2009, I’ve had ridiculous issues with sleep, or should I say the lack thereof. I’ve tried multiple prescription sleep medications to no avail. Even strong pain medications make me feel absolutely horrible overall but don’t always break through the pain cycle enough to help me to sleep.

I am asked sometimes about the pain level and how I manage to function with it. To give you an idea, look at the McGill Pain Index, which details various types of injuries and the associated pain levels. The pain from CRPS (also known as RSD or causalgia), is rated slightly higher than the amputation of a digit. That’s right, the pain is WORSE than that you’d feel if you cut off a finger or a toe. Needless to say, sleep is elusive more often than not.

Clearly our bodies need sleep to heal and to renew. Lack of sleep hinders that renewal process, causing even greater pain, and a vicious cycle begins. Even worse, pain can awaken you once you have actually fallen asleep, resulting in non-restorative sleep. Altogether, the twin symptoms of lack of sleep and chronic pain can then result in loss of cognitive function.

I wish that I could say that I’ve learned coping mechanisms to help me deal with these problems, but the reality in my case is that “the best defense is a good offense.” How so?

• I don’t schedule early morning appointments if at all possible.
• I warn family and friends that I may at any time find it necessary to cancel plans.
• I keep my NOOK Color loaded with plenty of light reading to try to distract me during times when the pain is at its worst.
• I schedule medications that are most likely to cause drowsiness in the evenings.
• I don’t even attempt to drive when I am sleep deprived (which is pretty much all of the time). Driving while sleepy can be as dangerous as driving under the influence.
• I have surrounded myself with a support network that genuinely attempts to understand and accept the limitations of my injury and disease.

Most importantly, I’ve learned that I myself must accept the cognitive loss that comes with the pain and lack of sleep. As frustrating as it often is, beating myself up over it accomplishes no good. Instead, I strive to be thankful when the good days come and accepting when the day doesn’t go so well.

How do you cope with loss of sleep, especially when it is caused by pain?

About the Author:
Shari is the wife of a career Air Force man and mama to a beautiful teen daughter. After spending twenty years in the corporate world, both in the legal/financial fields as well as more recently in online media specializing in women’s interests, Shari’s professional life took an unexpected turn when an injury paralyzed her left leg, resulting in Complex Regional Pain Syndrome.

Not content to merely accept such a diagnosis and determined that something positive would come from the negative, Shari launched Rain into Rainbows, which serves both as an outlet for Shari’s thoughts and emotions regarding her life-changing injury and chronic illness, as well as a resource for other women with similar experiences. Her hope is that by sharing her story with others, she might begin to turn the page into the next chapter of her life as well.

Popularity: 12% [?]

What it is like to have an Adult Child with Fibromyalgia

When I started my website I forewarned my parents that I’d like them to write a little something about how they have felt having an adult child with fibromyalgia. I think hearing different perspectives are good for everyone. Below are some of my mom’s thoughts. Soon I will have my dad’s thoughts as well.

From my mom. . .

 

Like all parents, we are so very, very proud of Felicia. We love her dearly. Yes, she’s the apple of our eyes – and The Helpful Hubby is the best son-in-law any parents could have. Well enough of the good stuff – now for the unexpected. Felicia has handled fibromyalgia better than I thought was humanly possible. Maybe receiving the diagnosis when a busy student at a large university is the time to get the crummy news. She couldn’t stop, she didn’t have too much time to reflect, and those papers and exams were always calling for attention. (I’m sure not a minute was wasted.)

 

Felicia’s diagnosis took about a year. She had not kept us “up to speed” about the number of different doctors but in an efficient fashion, we got the explanation, “don’t worry, don’t come up, there’s no cure.” Anger and fear weren’t really my feelings, more: sadness for my “baby,” “Ick, how can I help Felicia, maybe it’ll go away if it’s sort of a chemical imbalance.”

Mainly I wondered about her ability to conquer her courses and what, if any, adjustments the university would/could make. I wondered if she would get so bad that she would be confined to a bed. Then Felicia brought home a fairly technical book. I read most of it. She’s been bringing home reading material ever since. I’m not quite so ignorant about fibromyalgia now.

We still really want to help Felicia but, that is hard to do, especially with her living out of state. Always my first instinct is to wrap my arms around her and just hug tightly for a really long time—maybe hours. Well, with fibro, that’s not a warm, cozy feeling for her to say the least. I can’t say, “It’ll get better,” because it may get worse before it gets better. I want to bake goodies, but know I’ll be chastised because she’s trying to eat nutritiously. Since I live far away, I can’t run over and do the laundry or dusting. She’d probably love it if I’d fly out for seasonal gardening though. I’d like to baby her in many ways, but that doesn’t make her fibromyalgia get better, it doesn’t help Felicia deal with life better, it just makes Mom feel better.

Felicia, my husband, and I talk frequently. Felicia and her father have a very special, loving relationship. Mostly I whisper little prayers throughout the day. We try to support both her and The Helpful Hubby in any way we can from a long distance.

Generally when I see or talk with Felicia, the first thing I do is figure out if it is a good or bad day. When I can visit her, usually her general posture or eyes tell me, but sometimes it’s the braces, compresses, or verbal warning of, “don’t touch me.”

I hated during my pregnancy when everyone else thought it was the only topic to talk about. So, if Felicia wants to talk about fibromyalgia, I’ll talk, but I don’t make it the core of every conversation. Felicia is so much more than this condition. She is a vibrant, interesting, creative, intelligent, compassionate, and humorous woman who happens to be dealing with a lot of pain.

The major way I see her coping with fibromyalgia is through determination. If she says she is going to do something, it will be done. It will be on time and correct, and with bells and whistles, when appropriate. She has been the family organizer since age 4.

She tries to stay positive. It drives her crazy when people don’t even try to be pleasant when dealing with the public. Felicia is not one of those obnoxious cheery people. She wakes grumpy, gets headaches, has fibromyalgia; but she looks for ways to make things better, she doesn’t dwell on the spilt milk in life, and somewhere she has learned to make lemonade from the lemons life gives her.

Felicia monitors her activities. She is a really good planner. She will space steps out so that everything isn’t left until the last minute. Although she deals well with crisis, she hates being put in that position due to others poorly made plans.

Felicia uses tools that help make household chores easier. One, not-so-obvious “tool,” is being organized. She claims that everything in her house as its own “home.” She can tell someone exactly where to find almost any item in her house. This is helpful for others when they are trying to help her – no need to search around for items or feel badly asking where something is.

She researches fibromyalgia, reads books and articles, searches on-line, and learns continually. She is active in local groups, and of course she started her website and tweets. She really believes in a place for positive examples of people living with fibromyalgia. She hopes to be a banner of information for most, a shared moment for many, and a ray of hope for some. As her mother, I want her to succeed. As a person, I want you to succeed too. May this find you making progress which will lead to your good day.”

About Felicia: “I’d like to think that everything that I do in life is done with passion. To me it’s not worth doing something if you don’t believe whole-heartedly in it! I enjoy photography, flowers, baking, traveling and bicycling and am an active volunteer with my local Arthritis Foundation office. Everyone who knows me also knows my favorite color is purple. I started my Felicia Fibroblog in hopes that I would be able to create a community where people with fibromyalgia and other medical conditions relate. I planned to share resources I have found to be helpful as well as my own personal tips and tricks. I am lucky enough to know a few other ladies with fibromyalgia and will sometimes share their experiences as well.”

Popularity: 8% [?]

Featured Workshops Today: Working and Chronic Illness

If you are one of the millions of people who live with a chronic illness and yet you still get up and go to work every morning, you may find there is a lack of resources for your particular situation. Although you may feel as though you do not necessarily fit in with the career-oriented people who are healthy and not suffering from challenges on a daily basis, you may also feel that you do not specifically relate to those who are home a great deal of time and not able to physically work.

We have found some wonderful resources for you and you will discover that having chronic illness does not prevent you from also having an exceptional career. Although the career you have originally chosen may no longer be possible due to your situation and physical limitations, that does not mean that there are not thousands of career options that you may still choose from, a few which are likely to feel passionate about.

In fact, you may find that having a chronic condition may help you narrow in on your passions and what you enjoy the most, and thereby, make your career choice, an intentional one which can serve you in years to come.

Join us for a couple of workshops where we speak about careers and chronic illness and working well when chronically ill.

Are you interested in “Finding the Job You Desire and Can Do? Rosalind Joffe will be you through the process of looking at what your abilities are (and yes, your inabilities now) and how to go about choosing a wise career path that can work well with the and picked ability of your chronic illness, as well as those leadership skills you have mastered due to managing your illness effectively.

You will also hear from some people who have started their own business, such as Jennie Krogulski who is the founder of Hilton Head Nannies and works each day to best accommodate her career path as well as the daily difficulties with her chronic condition. Rosalind Joffe built on her own experience of living with chronic illnesses for 30 years, including multiple sclerosis and ulcerative colitis, when she founded cicoach.com. And Trish Robichaud is a Maximum Life & Healthy Relationship Coach who lives with multiple sclerosis & major depression. See Illness, Work, Career, and Starting Your Own Business

You also have the opportunity to hear from Lisa about starting Rest Ministries, the founder of Invisible Illness Week. She shares how she has Managed Chronic Illness and a Nonprofit Organization.

This year instead of having a live virtual conference we are featuring some amazing workshops from past years. You can find them all here on Blog Talk Radio or, if you use itunes, enter “invisible illness” under “podcasts” and then download them to a music player to listen to anytime. >More instructions here

Popularity: 4% [?]

Featured Workshops Today: Communicating With Others

Communicating is a big deal when it comes to making some practical steps toward living with joy. We recommend the following workshops from past years.
“Helping Others Understand Your Pain” with Karen Lee Richards, a writer and patient advocate who works at HealthCentral and lives with fibromyalgia.

It’s OK to say NO: Building Healthy Boundaries” with Jenni Prokopy is a nice reminder that we are allowed to take care of ourselves. Jenni is the founder of chronicbabe.com and a journalist.

And “How You Can Help Those Who Help You” with author Jo Franz who lives with multiple sclerosis.

Times get tough when you are “Coping with Crises on Top of Chronic.” Join Jenni Saake (founder of Hannah’s Hope: Seeking God’s Heart in the Midst of Infertility, Miscarriage & Adoption Loss ) and Lisa Copen founder Rest Ministries, as we chat about surving crises in the midst of Chronic illness. Between the two of us, Lisa and Jenni have survived 45 years of multiple chronic illnesses including Chronic Fatigue Immunity Dysfunction Syndrome (ME/CFS), rheumatoid arthritis, fibromyalgia, diabetes, endometriosis, infertility, chemical sensitivities and more.

These women know that life doesn’t stop just because we are in pain. Hear us share our hearts and experiences through surgeries, infections, IV therapies, broken bones, unemployment, adoption journeys, and grief ranging from miscarriages to the deaths of grandparents. We will share a few survival skills for coping with the stress of everyday life when crisis hits.

This year instead of having a live virtual conference we are featuring some amazing workshops from past years. You can find them all here on Blog Talk Radio or, if you use itunes, enter “invisible illness” under “podcasts” and then download them to a music player to listen to anytime. >More instructions here

Popularity: 4% [?]

Featured Workshops Today: Searching For Self Understanding

Do you ever feel a bit emotionally stuck? Whether you have the blues or have gone through some major depression, some our favorite marriage and family therapists join us with their seminars, as well as some illness advocates. All of these women Lisa is honored to call friend.

Here are some of their workshops we know you will enjoy and hopefully get something wonderful and helpful out of!

“Living with Chronic Illness: Why It Hurts, How to Cope” Georgia Shaffer, Maureen Pratt, and Mary Yerkes join us in an interview style 1-hour conversation. There are some powerful tools that can start helping you today!

A bit about these women:

Georgia Shaffer is a licensed psychologist in Pennsylvania and a certified life coach. For over 15 years, she has enhanced people’s lives by teaching how to identify: “What needs to grow? What needs to go?”

Author and speaker Maureen Pratt lives with multiple illnesses, including organ-involved lupus, cardiovascular disease, osteoarthritis, hypothyroidism, and chronic back pain. Through her books, including “Peace in the Storm: Meditations on Chronic Pain & Illness,” she encourages others to deepen their faith and Christian walk in spite of and with living with chronic illness.

Mary Yerkes is a professional life coach who specializes in working with the chronically ill. Diagnosed with rheumatoid arthritis and other autoimmune diseases in 1997, Mary combines years of practical experience with her professional training to help the chronically ill build meaningful and significant lives.

More programs you will love!

In the program, “Understanding How we Uniquely Deal with Difficulties in Life,” Georgia Shaffer explains how we handle the stress of illness in our lives is very unique to us. Our personality, faith, coping skills and more all come together and one person’s way is not better or worse than anothers.

Leslie Vernick shares with us something we all encounter at one time or another: “Dealing with Hurt Feeling and Mixed Up Relationships.” Leslie Vernick is a Christian counselor who doing most of her work with relationship problems. She focuses on improving relationships with others, God and self, teaching people how to address conflict, speak the truth in love, handle adversity in a God-centered way and negotiate through difficult and destructive relationships with biblical principles.

Regardless of your faith, Leslie will give some practical tools and tips to help you with the people in your life. When things go wrong in relationships, is someone at fault? Do you feel like you would have responded differently if your illness didn’t get in the way? Leslie will explain how to respond when things don’t turn out the way we’d hoped.

If you feel like there are times when you are messing up your own life, you’ll want to listen to Jenny Prokopy’s presentation, “Overcoming Self-Defeating Behaviors” Jenni is the founder of the popular chronicbabe.com

This year instead of having a live virtual conference we are featuring some amazing workshops from past years. You can find them all here on Blog Talk Radio or, if you use itunes, enter “invisible illness” under “podcasts” and then download them to a music player to listen to anytime. >More instructions here

Popularity: 4% [?]

About This Week’s Workshops

Monday is officially the first day of National Invisible Chronic Illness Awareness Week. In past years we have featured a 5-day virtual conference with special guests who help us learn to live better lives even though we also deal with the day to day struggles of an unpredictable chronic illness.

This year we will be featuring some of these exceptional workshops. Each day we will provide links to 3 or 4 podcasts we think you would enjoy. We hope that you find the information valuable and helpful and please feel fre to share it with a friend,on your favorite social network, or even in your own blog (you can actually get the embed code at blogtalkradio.com)

You can find them all podcasts here on Blog Talk Radio or, if you use itunes, enter “invisible illness” under “podcasts” and then download them to a music player to listen to anytime. >More instructions here

Popularity: 9% [?]

Is Living With Illness Choosing to Give In?

Lisa Copen

Nearly one in two people live with an illness, and most chronic illnesses are invisible. Conditions such as chronic fatigue syndrome to diabetes rarely have visual side effects that people can see. It creates a challenge for those who live with invisible daily chronic pain, symptoms, and side effects.

For example, though I look fine on the outside, I have lived with rheumatoid arthritis for 18 years. It has been degenerative, despite the best of medical treatments. Recent tests have revealed that I have shoulders that are so disintegrated it’s amazing they still work, knees full of pieces of bone and old blood clots, and osteoporosis.

I have started seeing a new rheumatologist who I hope will more aggressively treat my disease and slow down its progression. I am 42. I told my physician, “My son is 8. I need at least 10 more good years. What can I do to make this happen?”

Despite the detours, I have had the opportunity to build a nonprofit organization of nearly 15 years, to serve those who live with chronic illness, through a Christian foundation of faith. Although I believe God still heals today, He rarely does it according to our schedule. In the meantime, there is a strong need for friendship and support.

Between my family and ministry, I have ample reason to get up out of bed each day and not allow my illness to define me.

I have never given in and allowed it to consume me.

But because I do not enter marathons, audition for reality TV show contests on deserted islands, or sign up for karate class, some people assume I have.

“You’ve just given in to your illness,” I have heard from both strangers and friends. “You need to fight it more.” This is often followed by their specific advice on what I need to do to “fight it.”

What defines “giving in” to your illness? There are a variety of ways that people who do not have an illness define the actions of those who are ill.

1. We are not using the alternative treatment of product that they sell that will make it all go away.

My husband was recently berated by a friend’s wife, “We are so mad at you guys!”
“Why?” he asked.
“Because you won’t try the water!” she replied.
Honestly, I’ve done my research and if I am going to go with a marketing scheme that promotes health benefits for just $200+ a month, it will be the chocolate one. I mean, who doesn’t like chocolate?

2. We are seeking health assistance from doctors or medical specialists.

A friend on recently posted on a social network that he cured himself of a disease by ignoring the “mumbo jumbo of doctors” and asking his dad for advice. He claims he “never gave in.” In his eyes, because I am seeing a rheumatologist with “MD” behind his name, I have chosen to give in. No one cares that my rheumatologist happens to have his own clinic about specialized medicine, and that has written books on the alternative treatments he uses with patients, in addition to Western medicine.

3. We are pacing ourselves.

Chronic illness uses up a great deal of energy and only the one who lives within the body knows what they can and cannot do on particular days. Sometimes we have to give it our best guess and make a choice, not positive if an event will cause us to be tired for twelve hours or four days. When we choose to not attend an outing we’d planned on because we are in deep pain, we frequently hear, “Oh, you are just giving in to your illness. You are letting it control you.” No, we had to make a choice and we did. Healthy people will understand this when they reach about age 80.

4. We are not where someone wants us to be spiritually.

We all grieve, we question, and we sometimes get depressed, regardless of our faith. But if these emotions are noticed by others they are quick to offer the spiritual version of “Don’t worry, be happy.” We are told that we are allowing the sin in our lives to get the better of us and it’s causing our illness. We are not praying consistently, or hard enough, or in the right way. One man recently told me that I needed to try a particular alternative treatment (that he happened to sell) and if I did not, then it was obvious I was just giving in to my illness and really did not want to get well … and that God knew that!

5. We are not doing physical activities that we are expected to do.

If you watch well known magazines written specifically for those with certain illnesses, even they are guilty of featuring people who have the disease but are still able to do extreme physical activities. A person with rheumatoid arthritis may run a 25-mile marathon and are quoted saying, “I chose to never give up.” I have chosen to never give up either, but I am blessed to get my feet into extra-wide diabetic shoes and walk around the grocery store. My own limitations, or those of one who uses a wheelchair each day, is not something that is a measurement of determination or stubbornness about our disease.

Each person who live with a chronic illness knows the daily difficulties in finding a balance between living his life in the fullest way possible, and managing his disease effectively at the same time. There will be many times that our choices do not make sense to people around us. When we hold back from a new treatment or a fun outing, we will be told we are “giving in” and letting our illness define us. And when we take a chance and stretch ourselves, we will be told we are not thinking things through or considering the consequences or risks involved in our choice.

If you live with a chronic illness, only you are capable of making the wisest choice possible based on many factors. If you love someone with an illness, be cautious in sharing your opinion about his or her decisions. If you are genuinely concerned, instead of offering advice, ask questions, such as, “I know you must have given a lot of thought to your decision to (fill in your blank here.) What was it that persuaded you?”

About the Author: Lisa Copen is the author of “Beyond Casseroles: 505 Ways to Encourage a Chronically Ill Friend”, founder of National Invisible Chronic Illness Awareness Week and Rest Ministries. She is a sought-after speaker who brings joy, humor, and hope, to those who live with chronic illness, from her own 18-year journey with rheumatoid arthritis. This article was formerly featured at the Huffington Post where you can read 40 comments.

Popularity: 15% [?]

Why Are We Expected to Be Brave in the Face of Illness?

Lisa Copen

The headlines read “Oliver Stone Hails Michael Douglas’ Brave Cancer Fight” and “Brave Brett Michaels wins Celebrity Apprentice.” Even as Belgian action movie actor Jean-Claude Van Damme recovers [this week] from his recent heart attack, I’m sure his friends are saying he is being brave about even the admission of this attack, which came just one day after his 50th birthday while filming a kickboxing movie.

Are those who suffer from stage-four cancer, such as actor Michael Douglas, brave? Are those of us who live with the chaos of chronic illness, such as musician Brett Michaels, who is one of 23 million insulin-dependent diabetics, brave? Are these individuals more courageous than actors Patrick Swayze or Farrah Fawcett, who lost their battles to cancer last year?

Does our society create grand expectations that exemplify bravery and courage as the only acceptable response to an illness crisis? Celebrities coping with health crises are just like the rest of us. They get up each morning and put one foot in front of the other, whether that means an unpleasant medical treatment or going to the grocery store–but these actions are typically photographed and labeled as signs of “bravery.”

I am sympathetic to the friends of celebrities who appear as a guest on a television shows such as The View and are asked to reveal how their celebrity friend with illness is “really doing.” There is no appropriate answer. If someone is truly a friend, as Danny Devito is to Michael Douglas, he is not going to say, “He feels terrible and isn’t looking too hot either.” Instead he will comment on how brave his friend is. It’s a considerate response to an awkward question, and it does contain a hint of truth.

Is there an alternative to being brave?

While there are tools online such as an illness symptom checker, there are few ways to understand how one is coping emotionally with a disease. If those of us with illnesses were to sit in bed and sob uncontrollably, how long would it take until our friends stopped calling us brave and said we were a basket case? Can a good cry be a sign of bravery, too? Who among us is not brave while fighting a disease that threatens to take away our quality of life or life itself?

What exactly is bravery?

The definition of the word “brave” includes possessing or displaying courage, being able to face and deal with danger or fear without flinching, and making a fine appearance.

I believe anyone has dealt with the fears of a health crisis certainly has moments of bravery. But let us not forget that emotions are fragile at times; allowing ourselves to be vulnerable and let some emotions through is not only acceptable but a healthy coping tool. Tears do not signify a lack of bravery.

When our loved ones see us look the doctor in the eye and ask, “How long do I have to live?” they are seeing us “make a fine appearance” as the definition of bravery possesses. They may not see the tears that fall uncontrollably in the lonely moments at 3 AM. Brett Michaels’ Rock of Love show may have been a successful indulgence, but when he was fighting for his life, it was his daughter’s fear of growing up without him that “gave me this unsinkable strength,” he declared on Oprah on May 19, 2010. “It gave me this amazing courage to want to survive.”

How does one show bravery in the midst of illness?

In 2009 I spent eight days in the hospital when I contracted the flesh-eating bacteria in an ankle wound that quickly spread up my leg. To be honest, I felt brave at times. I did not shed a single tear. My husband brought my then-five-year-old son to the hospital to play with the electric bed and eat mac-and-cheese from the hospital cafeteria. I gritted my teeth every couple of hours when another medical professional would visit my room with the intent of causing some kind of pain.

So, within the context of the definition of bravery, I made a fine appearance. I don’t know if I possessed courage, but I tried to display it. When faced with danger (like the daily debriding of the wound) I did my best not to flinch. But what choice did I have? The needles, IVs, MRIs, and pain medication disbursement were not in my control. I tried to be brave, but most of the time I was just choosing to “act” brave, despite my fear of the procedures and pain, frustration of the circumstances, and even panic over the possibility of losing a limb or even my life.

Can faking bravery can be enough to get us through?

In conclusion, let us remember that bravery can be a choice. Even if we do not feel courage, we can still seek to display it, we can attempt to face danger without flinching, and we can make a fine appearance. At the same time, let us not forget that we are human beings who were designed to feel fear, need affirmation and loving support, and shed tears. For myself, this is intertwined with my faith in God and knowing when to surrender to the emotions and when to surrender them over. Finding the right balance between putting on a brave front, and being true to our own emotions is, I believe, one of the best coping tools we can discover for the journey of chronic illness.

Bravery comes in many forms, not all of them gallant or daunting tasks. Michael Douglas’ films list is likely not important to him at the moment. Despite side effects of treatment for stage-four cancer, he recently walked his daughter to school, reveling in the moment that he was able to do so and wanting to treasure the simple moments. His bravery came in venturing out into the public eye, where his appearance and strength could be observed and discussed. Each of us must decide our own definition of bravery, and for those of us who know how much we suffer in silence, it may be as simple as making a fine appearance and then being our true selves around those we love and trust the most.

About the Author: Lisa Copen is the founder of National Invisible Chronic Illness Awareness Week and Rest Ministries, the largest Christian organization that specifically serves the chronically ill. This article was formerly featured at the Huffington Post and received 245 comments before comments were closed. See some of the interesting discussion at the Huff Post.

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