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.

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What Does Invisible Illness Look Like?

Susannah Hunt

This year’s slogan for National Invisible Chronic Illness Awareness Week is “DEEP BREATH START FRESH.” That’s kind of what you do when you have asthma. You hope every breath will be a fresh and a better one. And those of you who know me, know I suffer from a severe form of difficult-to-control chronic asthma, plus I have a diagnosed wheat gluten allergy and suffer from rotten migraines.

But you, reading this, may also have an invisible illness of your own. One that affects every part of your life, just as my illness affects mine-perhaps, even more so.

• How many times have you felt that you were the only one?
• That people didn’t understand you because they didn’t know you?
• That people thought you were making it up?
• That people just assumed you were ok because you looked ‘alright’?
• That being ‘well’ was something you’d never be, or you’d never feel?
• That those around you–your nearest and dearest, couldn’t cope?
• That you couldn’t cope?

Probably multiple times, and most likely, most days.

Life with an invisible illness harbors a gamut of emotions. You feel anxious, insecure, guilty, frustrated, confused, misunderstood, misrepresented, fearful, emotional, and many more. And to cap it all, you think people don’t understand, because they can’t see what is going on inside of you.
Therefore, because your illness is chronic, incessant, unending, unstopping– alas, it’s invisible.
Back in February 2010, I wrote a blog post entitled “False Impressions: Do you Look Sick?” In it I wrote this:

When asthma is such a hidden disease, how many of you actually look sick with yours? Do we give a false impression of being a well person, or is it possible to tell that there is something going on inside that just isn’t right, and just by how we look? So how when we see anybody going about our and their daily lives, do we know what is going on inside of them? Of course, many diseases have outward appearance manifestations– do we sympathize, empathize, or pity those people? Ridiculous really, considering we also have a chronic illness – just one that they cannot see.

I suppose, nowadays there are aspects of my illness which make it a bit more obvious.

For starters I carry a POC (Portable Oxygen Concentrator)

Plus, because of the severe breathlessness I get, when I’m at work, 3 days a week, I ride around on my little mobility scooter.

But without those aids, I am just me. I don’t look any different from anybody else really. There is nothing in the way I act or dress or appear that shouts out ‘she’s got a chronic illness’ and that is why this week, September 12th-19th 2011, many people worldwide are joining together to speak out and speak up for those of us who suffer from a chronic and invisible ilness. Just because we don’t necessarily look sick, that doesn’t mean to say we aren’t sick.

The number of times I’ve been asked to show the photo on my blue badge makes me in itself, sick! Why do so many people assume that you have to look disabled to be disabled. Going back to my February 2010 blog post, how should a disabled person look?

Here is something else that you might or might not know about my invisible illness:

Every 4-5 weeks a huge stockpile of drugs and food stuffs arrives in multiple bags and I get the chore of piling it all into my kitchen larder!

Not that much room for basic staple house hold foods now, is there?! And this is a small example of what having a chronic invisible illness can be like. How many people, for instance would know that about me?

So whatever your illness, just remember, there really shouldn’t be a difference in who you are, how you feel, and how much you can bring to the world through your life. My world has become so different because of my illness, but I truly believe it not only makes me a better person in the long run: more tolerant, more understanding, more sincere, more genuine, and one that possibly has even more to offer than before.

I definitely live a richer, fuller, deeper life now, with my chronic invisible illness. Plus I have the closest of relationships with my partner, family, and friends.

And importantly, I have learned one major thing in all my illness and suffering. . .

I have learned the true meaning of compassion.

About the Author:
http://mymusicallungs.wordpress.com is the diary blog of a Severe Chronic Asthmatic, who also suffers from Celiac Disease and Migraines. Susannah somehow manages to teach music part time in her local High School. She is kind and compassionate, and even though her illness is always there, she is always smiling.

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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% [?]

Labels of Love

Linda Elmore Teeple

“Nana is fragile,” my three-year-old grandson Evan declared. “She’s old, like Panda.”

Yes, it’s funny, and I take no offense, but our fourteen-year-old Labrador retriever is, in my opinion, far more fragile than me. Poor girl has lost most of her sight and hearing and her spindled legs spread-eagle when she walks.

During a recent visit, Evan spied a pad of stick-it notes on my desk and asked to have some. He then proceeded to plaster the notes everywhere. I didn’t see the pattern until he stuck one on my leg. He was labeling everything in the house that was fragile. His accuracy was amazing: TV screen, china cabinet, glass top tables, windows, decorative items—and Nana.

Evan looks at me with fresh eyes. His wisdom is pure, unencumbered by years of experience that will someday lead him to believe that he can look at the exterior of a person and judge what’s happening inside.

Just last night, my husband and I attended a social event where we chatted with several friends who are aware of my chronic pain. With awe in their voices, flickers of amazement widening their eyes, several friends said, “You look soooo good, you must be feeling better!” It is one of those moments when I want to look behind me to see who they are speaking to, for surely it can’t be me they mean.

What are they seeing that I’m not feeling? I appreciate their kind words and I’m female and vain enough to relish the compliments. I know they care about me and want me to feel good. I can share with them what is going on behind my looks-can-be-deceiving facade. I can take in their pained expressions of empathy and murmurs of concern, and welcome their hugs. Caring friends are like Evan; they see my fragility, understand the labels that define my condition and don’t judge me.

So, why was Evan plastering the house with stick-it notes? He was teaching his two-year-old brother Josh what fragile means.

I can hear Jesus saying, “Go, and do likewise.” (Luke 10:37 NIV)

About the Author:
Linda Elmore Teeple finds meaning and purpose in her chronic illness and pain through writing and encouraging others. Nature inspires her writing—the nature of the great outdoors, the nature of the human heart and the nature of relationships. Linda believes her call in life is to demonstrate God’s grace and to help others “get” grace on the heart level. You can connect with Linda at lindyteep@yahoo.com and http://natureofgrace.blogspot.com.

Popularity: 6% [?]

Shedding Light on Invisible Chronic Illness

Jaime Sanders

This week is National Invisible Chronic Illness Awareness Week where all of us with chronic illnesses and those who do not shine a spotlight on the epidemic of having an invisible chronic illness and to be uplifting advocates for so many without a voice. It’s an unfortunate reality that so many people go unnoticed or are ignored and forced to suffer in silence just because they “appear” healthy. The stigma that so many are dealing with can undoubtedly be overwhelming. The theme for this year is “DEEP BREATH, FRESH START.” It is to remind us to take care of ourselves in healthy ways and how to add more joy and sunshine into our lives.

My personal connection with invisible chronic illness is my battle with chronic daily migraine, depression and anxiety. On the exterior I look great; healthy and doing well. Yet, inside I am suffering on so many levels experiencing different types of pain be it mental, emotional and/or physical. For 25 years I have lived with the stigma of migraine and having my illness reduced to just a simple headache when in fact migraines are very different from headaches.

Migraine is a genetic neurological disease, characterized by episodes often called Migraine attacks where the blood vessels that are located within the brain constrict or dilate. The main pathways to get important fluids to the brain are either getting larger or smaller causing extreme pain due to the inflammation that is occurring. Often, migraine is described as pulsating pain because that is exactly what it is. Blood vessels are rubbing against different parts of the brain causing indescribable pain.

Typical migraineurs experience two to four migraines a month. In my case, I have 15 or more a month for at least three months (a year now for myself), thus classifying me as having chronic migraine. The causes of chronic migraine are classified as such according to MayoClinic.com:

You develop a heightened response to pain signals
The part of your brain that suppresses pain signals isn’t working properly

Various factors can increase the risk of developing frequent headaches including:

Anxiety
Depression
Sleep disturbances
Obesity
Snoring
Overuse of caffeine
Overuse of pain medications
Regular use of positions that cause strain on the head or neck

Coping with this kind of pain is a very difficult task, especially when you throw in bouts of depression and anxiety both of which are comorbid with migraine. I have had many challenges in learning how to cope with it all. I even attempted suicide in 2004 because the burden of pain and emotional distress was too much for me to continue battling.

Thankfully, I survived but had to spend three days in the ICU because the drug that I chose to end my life with and the amount that I took (almost a full bottle) causes such severe and quick damage to the brain and heart that I had to be monitored closely to make sure that all of it was removed from my system.

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. They were the reason that I’m here today. 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.

So I’m here to encourage all of you to live. There can be joyous moments in between the pain. Chronic invisible illness does not have to be the end all be all of your existence. I understand how frustrating it is to feel ignored and mistreated and spoken to as if you are imagining your very real pain.

The many doctor appointments, prescriptions and failed treatments can all bring a a failed sense of hope.

Remember that you are never alone. And people like myself are here to help. There are so many resources available for healthy ways to learn how to cope with your illness and where to find help when you need it. Let’s all work together to make invisible chronic illness something that is impossible to ignore.

Online Resources:

• Invisible Illness Week
• Migraine.com
• National Patient Advocate Foundation
• Psychiatric comorbidity and suicide risk in patients with chronic migraine
• American Association of Suicidology

About the Author:
Jaime Sanders is a 25-year sufferer of migraine disorder and over the past year has had chronic daily migraine. Jaime has undergone many different treatments including Botox injections, acupuncture, cranial sacral massage, chiropractic care, pain management, and has taken over thirty different kinds of medications in order to try and control her very debilitating disorder.

She is a wife of 14 years to a wonderful and supportive husband and a mother to three exceptional children. Jaime can not work due to her disability but she has made a commitment to educate others about her neurological disorder so that others would not have to suffer as long as she has. You can follow her journey through her blog at migraine-livinginpain.blogspot.com.

Popularity: 9% [?]

Rebuilding After Illness

Kim Arthur

I recently had a catastrophic computer crash, and as a result, lost four years of my virtual life. Unfortunately, I did not back-up any of my work. I was devastated, but what could I do? No matter how much I begged and pleaded, the virtual life that existed before the crash was gone.

And so it also was with my physical life. After a car crash, my life that existed before was abruptly gone.

What is one to do when a crash, either virtual or physical, causes what once was to disappear? The only thing one can do? Take a deep breath, and start fresh.

I am slowly rebuilding my computer files. On some level, I feel an odd sense of relief that my computer erased so much of my virtual life. I had so many ideas and projects saved, that I felt totally overwhelmed by the sheer volume of “stuff.”

Interests waxed and waned, but the “clutter” of the ideas remained saved on my computer in case I regained interest. But the thing with computers is there is only so much room to store data. Eventually, space runs out, and there is no room for rich, new ideas.

When I rebuild my virtual world, I will choose to only keep those things which are in alignment with who I am now and what my dreams are in this moment.

If I look back on my own life prior to the car crash, I see much the same thing. I held on to things that were no longer relevant in my life. I did so out of obligation, expectation, or fear of letting go and allowing change to flow. (I don’t do change well!) In hoarding the past, I was not allowing myself room to enjoy a present, or to welcome a future.

This brings to mind a lesson about forest fires. While incredibly destructive and a sad thing to witness, they serve an important purpose; to clear away the old brush to make way for new vegetation to grow. That vegetation, subsequently, nurtures wildlife. It is life-giving. It serves a higher purpose. Looking back, I see now that my spirit wanted to grow in my old life, but my “ego” kept me living out of alignment with my true self.

And, so, maybe it is with us and this thing called fibromyalgia. Maybe it is here to help us clear away the old and outdated from our minds and lives, so that we may make way for beautiful new growth and possibilities. Maybe it’s all part of a higher purpose. Maybe it’s here to bring us into alignment with our true purpose, so we can release the superficial clutter we filled our lives with before.

When you live with limited energy levels, you must learn to weed out the things that no longer have real meaning in your life so you have the energy to enjoy those things that make your heart sing.

Fibromyalgia and other invisible illnesses definitely create unexpected change in our lives, but I believe that our ability to live positively and joyfully with this condition is dependant upon our reaction to that change.

Do we rebel and fight against it, forever trying to turn back the hands of time to what our lives were before we shared our journey with this illness? Or do we accept it, consider that it may have a higher purpose for us, and set out on an adventure to find fertile new ground upon which to plant our heartfelt dreams?

I think I’m opting for choice number two. What about you?

About the Author:
Kim Arthur is a self-proclaimed Champion of Creativity, Diva of Delightfulness, Fairy Godmother of Fun. . . Kim created the awareness music video, “Fibromyalgia: What It Feels Like” in which she relates sensations she feels with Fibro to sensations those who do not have the condition may have felt at some point. She is currently creating e-books, courses, and fun goodies for women living with Fibromyalgia. Visit: http://www.FibroQueendom.com A royally positive place for women living with Fibromyalgia.

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Fun Resources For The Week – Quick Reference

Did you know just a few clicks of your mouse can help spread the word about Invisible Illness Awareness Week immensely! Thank you for participating in any of the ways below.

Copy and paste to your blog our press release and add your 2 cents too! Press Release About Bloggers for Invisible Illness Awareness Week

Read blogs about invisible illness

Writing your own blog? Share it with us!
Be sure to sign up here and list it here at Bloggers Unite so people can find it!

Are you on Facebook
Post a message on Facebook or your favorite social network about Invisible Illness Week

Please repost: “You don’t LOOK sick!” No, I don’t. But did you know that nearly 1 in 2 people in the USA have an INVISIBLE ILLNESS, such as diabetes, lupus, fibromyalgia, MS, rheumatoid arthritis, autism, bipolar disorder, cancer, heart disease, and many more. 9/12-18 is http://InvisibleIllnessWeek.com/ – Care enough to be informed and repost this to help spread the word! You never know how much someone is suffering silently.

Here are more Facebook goodies!

• Facebook Cause Page
• Facebook “Group” for Invisible Illness Awareness Week
• Facebook “Like/Fan Page” for Invisible Illness Awareness Week

Do you Tweet?

• Our hashtag is #iiwk11 (“invisible illness week 2011″)
• Cool things to tweet
• Get a Twibbon for your Facebook of Twitter avatar

What are people saying?
See what others are saying about Invisible Illness Awareness Week, their blogs about it, questions and more.

What is your favorite seminar?
Share a link to a program that touches you from our podcast seminars at Blog Talk Radio

Share a Video!
Watch and share on our videos! We appreciate it tons when you share it with friends!

Explaining Invisible Illness To Friends Can Be Challenging
http://invisibleillnessweek.com video shows how living with an illness can be hard to explain to friends who don’t understand how you pace yourself. Have you ever had a conversation like this one? What would you do differently? How do you explain yourself without sounding like a drag?

Living with A Chronic Invisible Illness is Like…
http://invisibleillnessweek.com shares some reflections on what living with a chronic invisible illness compares to, and they aren’t pretty–but they are real! But don’t lose hope! Connect with others and bring awareness to the campaign with a “deep breath, think fresh!”

 

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Video: Trying to Explain Your Illness to Well-Intentioned Friends

Have you ever gone to a party and stood around and had the conversation like the one below? If so, you may just be more “normal” than you think, because most of us with chronic illness could have written this script!

Friends can have the best of intentions, but we still can feel like we keep saying, “yes, but. . . ” and even we can get sick and tired of feeling sick and tired!

We look forward to your thoughts? Have you ever had a conversation like this? What would you have said differently?

Video is Copyright Lisa Copen, 2011 – Please feel free to embed or share, just include all code so it leads back to http://invisibleillnessweek.com – thanks!

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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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