I had just received the third pink slip in two weeks from the lab that said my payment was passed due. Over three times I had called and my insurance company had assured me that the lab work was covered and that they would mail out a check that afternoon. This time, when I finally got a representative on the telephone, I was polite but firm. I said that I wanted the problem taken care of immediately, and I wrote down her name and the supervisor’s name. It was time to get even more assertive.

Has assertiveness gotten a bad rap, however, among the chronically ill? Is it assumed that we won’t have the energy or stamina to fight all of the battles that we will face? When we do talk to someone in customer service, we are rarely taken absolutely seriously.

After all, isn’t it just the drugs that make us impatient and nit-picky about all of this insurance stuff? Has anyone ever brushed off your assertiveness simply by assuming, “She doesn’t have anything else to think about all day, so no wonder she’s upset!”? Or “She’s just taking her frustrations out on me because she has a chronic illness.”

When you imagine an assertive person, what comes to mind? Webster’s Dictionary says that assertiveness is “positive; affirming confidently; affirmative.” Too often we confuse assertiveness with aggression which is defined as “making assaults and unjustly attacking.” Most of us have had moments when we have slid into an aggressive mode, but assertiveness is based on one’s ability to confidently step forward.

Rather than becoming aggressive, I believe that the chronically ill often become burnt out on fighting and we simply avoid any conflict. Who has the energy to fight for our rights? Next time a situation arises where you may need to be a bit assertive, here are some things in which to remember.

I have the right to say no without feeling guilty.

For those of us with chronic illness, this is a big one! We must say, “no, thanks,” or “I’ll pass,” much more often than we would prefer. Even when we master the ability to say no, the guilt continues to sit with us for days. Let it go! You know your abilities and limitations and what is best for your own health and your family’s well being.

I have the right to state my opinion, even if I change my mind.

Have you ever been on a jury and you had to state your decision up-front, but than as the deliberations continued, you changed your mind about the verdict? You have the right to say what you think, but it’s best to think before you speak. Is what you say going to hurt someone’s feelings? Are your comments going to help the situation?

I have the right to take risks and try new things.

Just because you have a chronic condition doesn’t mean you have to eat at the same restaurant the rest of your life. Try new things! You may find a new hobby or a new activity that you are able to easily do, in which you would have never thought about.

“When I started taking photos it was on one of those cardboard cameras,” says Darcie. “But then I found that I really loved it and I wasn’t half bad. So I bought a real camera. It’s been fun. I’ve had an excuse to go to events that I couldn’t participate in before, like boat races, because I am ‘the photographer.’”

I have the right to be heard.

Whether you are having a conversation with a medical professional or your mother, you do have the right to be heard. Too many of us fall into the habit of talking all of the time, however, and forgetting that we also have the responsibility to listen. Know your boundaries and what you are willing to listen to and not.

When a man approached me after a health fair and said, “I can cure you in 30 days,” I replied, “You have sixty seconds to tell me why I should talk with you further about your product.” I listened… and no, he didn’t convince me. He felt okay about it though, and I got out of an uncomfortable thirty-minute sales pitch.

So be assertive – practice in front of the mirror if you must. As you step out and share your opinion, it may feel awkward at first, but then you will gain more confidence and it will become simpler the next time the opportunity arises. Even studies have shown that assertive people are more likely to have personal and professional relationships that are based on honesty and mutual respect.

If you lead a support group or are considering it, don’t miss Lisa Copen’s new book, http://StartAnIllnessSupportGroup.com for your ministry needs. Over 300 pages with step-by-step instructions on how to write a vision statement, promotion and attendance and much more!

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I easily can remember the day that my life shifted into a new kind of normal when I was diagnosed with rheumatoid arthritis. At the age of 24, having dealt with a few weeks of swelling in various parts of my body, sometimes to the point of being disabling, my doctor called me at work with the test results. I had a positive rheumatoid factor, she explained, which most likely meant that I had rheumatoid arthritis. Faking confidence, I asked her, “On a scale of 1 to 10, 10 being normal, what can I expect my life to be like from here on out?” She did not wish to answer, but after I told her I needed some kind of scale to know what side I was up against, she reluctantly replied, “If you are lucky maybe a six.”

Within days, I realized that everything in my life now be impacted by my disease and that there would be no such thing as “normal” again. Every detail of my life would change from the simple struggle to open a door, to stand from the chair, to walk across the room, or to shift gears in my car. Although my carefree lifestyle and attitude would stay imbedded within my heart and personality, it would take a back seat while I attemted to simply try to learn to function while in severe pain.

A few weeks ago, a friend from high school who was recently diagnosed with rheumatoid arthritis, searched the internet for information on the disease, and ironically ended up on the Rest Ministries website, where she realized she had known me newly 25 years ago from a high school of only 300 students.

We exchanged e-mails a few times and it is my hope that she found them encouraging. When I reflect on what I would’ve liked to have heard from someone who has lived with a chronic illness for years, upon my new diagnosis, these are the five things I find of most value to pass along.

[1] Get in touch with the national foundation or organization that is dedicated to supporting people who live with a chronic illness that you have recently been diagnosed with. Explain to them that you have just found out about your diagnosis and that you would like the most basic information. They may drop some brochures to you in the mail or send you to their website.

Despite the fact that you may have not had a chance to grieve your diagnosis yet will likely make this to seem discouraging, and if you begin to get things in the mail and are not ready to read them, put them aside for later. The important thing is to know that this organization will likely be the one that will provide you with the most current and objective scientific treatment options and you will want to be “in the know.” As your doctors are making suggestion for medications for you to start, and you are torn about them because of the long list of side effects, these organizations will be your best source of objective information.

[2] Know when to stop reading about your disease. There are millions of books, websites, podcasts, and more which will tell you how you can cure it, delay the progression of the disease, or most effectively treated with alternative treatments. The important thing is to glance over critical health and illness organizational websites so you are aware of where you can go to find information when you need it.

You should be aware of some of the symptoms that may occur because of your illness so that if they do occur, you can attribute them to it. However, don’t bury yourself in reading everything you can get your hands on. It will simply become too depressing, and many of the anecdotes that other people share may never apply to your life.

[3] Don’t lose hope about your situation. It seems there are new scientific discoveries on a weekly basis that may change how your illness progresses or as treated. For example, I have now lived with rheumatoid arthritis or 16 years and recently had four joints replaced in my left hand due to deformities and loss of abilities. But my medical team, a hand surgeon, rheumatologist, and a physical therapist, have all said that they rarely see these kind of surgeries now due to the new family of drugs available in the last 10 years that has rapidly slowed down the progression of the disease and destruction of the actual joints.

Even if there is not an immediate cure, as we scientifically grow closer to being able to know our exact DNA, we will be able to pinpoint which medication will best treat our disease, without having to jump from one medication to another, losing months and years sometimes of our health, in order to find which one works best. Hope and a positive outlook will have a profound effect on your disease and your life. So don’t give up and assume that your illness will be disabling.

[4] Think about who you would like in your life to be able to talk to about what you are emotionally and spiritually experiencing due to the recent diagnosis. The person may be someone you meet in an online forum for your disease, it could be a pastor, mentor, counselor, or even a good friend who is able to listen without trying to fix it. The most important thing is that you have an oasis where you can share what you are experiencing without feeling like you may be judged or where you will receive ignorant comments such as “no pain, no gain.” Check out your local support groups for your illness, or other support environments such as HopeKeepers, which is a unique small group Christian support environment for those who live with illness or pain.

Also, consider your personality and how you are best encouraged. Would you feel most refreshed by sharing what you are going through with just a friend, one-on-one, at a coffeehouse? Or are you homebound, and signing onto a website every day to receive encouragement and prayer would be beneficial? Remember, whatever works best for you at this time, may not best meet your needs in six months, so do not feel like you are stuck with a particular group or mention. Be willing to try new forms of support to find which best works for you.

[5] Ask yourself “What foundation do I have in my life that will help me through the difficulties that I will be facing?” Even if your illness does not progress rapidly, the daily aches and pains, as well as the emotional roller coaster and spiritual “why?” questions you will have, will leave you searching for a deeper meaning in life than simply solving your problem with a cup of hot tea. As a Christian myself, I honestly do not know how people live each day with a chronic exasperating illness who do not know the Lord.

This is what keeps me together: believing that my pain is never wasted, and that God always has a purpose and plan for it; acknowledging that God is always in control of my life and that of my circumstances come as a surprise to Him; and firmly surrendering to the fact that He has any specific purpose for my life and that any limitations I have experienced because of my illness will not hinder His plans. Even if you are not a spiritual person, you will likely find yourself facing those middle of the night blues, and I encourage you to look up a biblical websites like Bible Gateway and read through some of the Psalms. If you are unfamiliar with them you may find yourself pleasantly surprised to see that most of the people who live during these times faced severe hardships, deep depression, many doubts, and yes, even chronic illnesses and disabilities.

So, to sum it up, be well informed, set reasonable boundaries for the quantity of information you will intake, keep hope alive, find support through people, and then search for what will get you through the darkest of moments when the information and people you have counted on disappoint you. Discover a purpose in the pain that is greater than that which the world will tell you. if you put your life on hold completely you will have regrets later on. As the late John Lennon once shared, “Life is what happens to you while you’re busy making other plans.”

Feeling overwhelmed and misunderstood? Don’t miss Lisa Copen’s book, Why Cant I Make People Understand? Order at WhyCantIMakePeopleUnderstand.com and learn why you feel the way you do and what you can do about it to make living with a chronic illness easier.

Holidays past you may have easily sat around the table of relatives before the feast and play the “I’m Thankful For. . .” game. When it was your turn, without hesitation, you chose one of the many things you were grateful for to share: “I’m thankful for my job, my family, my financial security.” And–and, ah yes, there was that thing called “health.”

Now though, the ease of being able to list health on your thankful list has disappeared. And perhaps you are even struggling with some other things you’ve lost, in part, due to your loss of health. Maybe the lack of finances keeps you awake at night in addition to the physical pain. Or maybe it’s the empty side of the bed where your spouse once slept.

Can we still be thankful? Yes! In his book “You Can Be Happy No Matter What: Five Principles for Keeping Life in Perspective,” Richard Carlson (who was well known for his “Don’t Sweat the Small Stuff” book series before passing in 2006), writes, “Most of us experience fleeting moments of happiness but then let them pass us by without due notice. . . We do this because we are always looking to find happiness somewhere else.”

So, what are some things that we can thank God for, despite our illness? Friends who care, a roof over our heads, and that we have hope and faith. All of these are important. But what are some of the unusual things that someone with a chronic illness may really be thankful for that a healthy person may not give a second thought?

• A drive-thru of any kind: for prescriptions, coffee, food and banks
• Parking spots, especially close ones that don’t require us to pull out our placard
• Sugar-free desserts and the people who bring them on special occasions, remembering we can’t eat sugar
• Being able to watch an amazing sunset without walking five feet from the car
• Unexpected clear freeways when we were expecting rush hour traffic
• The grocery clerk that says, “Can I help you to you car with that?” even though you are only twenty-seven and look perfectly healthy
• Shopping carts that have four working wheels that all go the direction they ought
• The ability to sleep well on a hotel bed instead of sitting in the bathroom reading all night so as not to wake our roommates
• People that smile at us for no apparent reason
  UPS delivery men who don’t give it a second thought that we are still in our pajamas at two-thirty in the afternoon
• The smile of our child when we’ve done everything in our power to make sure she has a good time–and she actually does
• Being able to get both shampoo and conditioner out of the bottles and hold your arms up long enough to use them
• Bottles and jars that open easily and don’t require us to try three different jar openers
• Products that have the word, “automatic” or “self-cleaning”
• Car keys that turn easily so the ignition starts
• The ability to request a wheelchair at the airport
• Doctors who actually give you a light hug on your way out of the office say, “I wish I could do more.”

In her book, “Have a Little Faith!” author Sherri Connell reminds those who have their health to be grateful for their abilities. “When was the last time you took the time to thank God for being able to sleep six hours straight or for giving you the strength to wash your hair? Have you ever praised Him for being able to scrub your toilet or being able to refill your soap dispensers? . . . Have you ever been elated to be able to dust a few pieces of furniture or for making a simple meal? People who have disabilities count blessings others never even stop to think about!”

If counting your own blessings feels a little dry, then have some fun with it like I did above and put a spin on what you’re thankful for. Start a “Funny-Gratitudes-that-Affect-My-Attitude” journal and see how quickly you will be able to–not only have the longest list at the family gathering–but create some giggles as well as personal reflection among those you love.

Get a free download of 200 Ways to Encourage a Chronically Ill Friend from the book “Beyond Casseroles” by Lisa Copen when you subscribe to HopeNotes at Rest Ministries.

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Just post a couple Seuss-style sentences below in the common section that have anything to do with the holidays, illness, etc. and we will take pick our two favorites next week and send you a little spa just as our treat!

Feeling Grinchy?

Every person around
The country it seemed
Liked Christmas a lot…
All was joy, red and green.
But the Grinch,
Who lived with illness,
And had a heart of the blues,
Did not like Christmas!
The Grinch dreaded Christmas!
The whole Christmas season!
So much to do, so little energy,
there were all kinds of reasons.

It could be said that the medicines
were making her mind feel like putty,
She went shopping at last,
and forgot why she had gone—how nutty.
But we think that the most likely reason of all,
May have been that her heart was hurting,
trying to find her place in it all.

But, whatever the reason,
Her heart or her head,
She laid there on Christmas morning,
with a feeling of dread.
Staring up at the ceiling from the bed, feeling very down,
She wondered how to make it through this day,
without even the hint of a frown.
For she knew every friend and family member around,
Would be arriving soon,
ready to open the gifts and paint the town.
“I just want to feel decent!” she snarled with a sneer.
“Today is Christmas! It’s actually here!”
Then she growled, with her Grinch fingers nervously drumming,
“I must find a way to keep the pain from coming!”

For, later she knew…
…All the relatives would arrive
They would bring with them her nieces and nephews who would make a
mess
and tons of noise.
They’d rush for their toys!
And then! Oh, the noise! Oh, the noise!
Noise! Noise! Noise!
That’s one thing she hated!
The NOISE! NOISE! NOISE! NOISE!
Then the family, young and old,
would sit down to a feast.
And they’d feast! And they’d feast!
And they’d FEAST! FEAST! FEAST! FEAST!
They would start on pudding, and rare roast beef,
With her irritable bowel,
the Grinch couldn’t eat these in the least!

And then they’d do something she liked least of all!
Every family member, the tall and the small,
Would stand close together, and say, “You look so great!”
They’d all tell her she needed to get back to work,
Stop lazing around in her pajamas so late!
They’d talk! And they’d advise.
And they’d think they were so wise.
And the more the Grinch thought of the Christmas-Nice
The more the Grinch thought,
“I must stop this whole thing!
“Why for over five years I’ve put up with it now!
I must either deal with it or convince them somehow!”
…But HOW?”
Then she got an idea!
An awful idea!
The Grinch got a wonderful awful idea!

“I know just what to do!”
The Grinch laughed in her throat.
And she made a quick run to the closet
for her lounging coat.
And she chuckled, and clucked,
“What a great Grinchy trick!
“With this robe and my slippers,
I’ll look just like I’m sick!”
“All I need is a sniffle, a cough, maybe a cane…”
The Grinch looked around.
But since canes are scarce, there was none to be found.
Did that stop the old Grinch…?
No! The Grinch simply said,
“If I can’t find a cane, I’ll just look sick instead!”
So she got out her pale makeup
and tried not to use anything pink,
She made sure the circles under her eyes,
were not covered up, but seen.

Then she threw on some sweats
And put her hair up in a twist
It didn’t look fancy,
It looked like you do when you’re sick.
Then the Grinch said, “I’m ready”
They can start to arrive,
I’ll be nice to everyone,
But I’m not going to lie.”
The family members arrived
and saw the Grinch arrive at the door.
“What’s happened to her?” They whispered and more.
The Grinch said, “Hello, come in, how are you?”
And when they asked her she just said, “Today’s not a good day.
It may be Christmas but I still feel a droop.”

Then little Cindy-Lou arrived
dragging her noisy toy behind her.
This was more than the Grinch could take!
She couldn’t allow that noise to batter.
The Grinch reached out and took the toy,
“let me have that, hon..”
She stared up at the Grinch as asked,
“Auntie, why are you taking away my toy? Why?”

But, you know, that old Grinch was so smart and so slick
She thought up a lie, and she thought it up quick!
“Why, my sweet little tot,” the Grinch lied,
“There’s a better one under the tree,
we have even more to surprise!
“So I’m taking this one away for now, my dear.
“I’ll put it away for now, and later, bring it back here.”
And her fib fooled the child. Then she patted her head
And sent her to the tree to open up a quiet puzzle instead.

The Grinch thought she had it all figured out,
At least people understood. There was no more doubt.
She expected to hear people talking about her,
In the kitchen they surely must all be worrying about.
“That’s a noise,” grinned the Grinch,
“That I simply must hear!”
So she paused. And the Grinch put a hand to her ear.
And she did hear a sound rising through the wall,
It was joy and fun, at first it wasn’t concern at all!
The sound wasn’t sad!
Why, this sound sounded merry!
It couldn’t be so!
But it WAS merry! VERY!

She stared into the kitchen,
The Grinch popped her eyes!
Then she shook!
What she saw was a shocking surprise!
Cindy Lou sat in her mom’s lap and said,
“What’s wrong with Auntie?”
Her mom told her quietly, “She’s a very special lady.
When we visit her, she often tries to look nice,
But she still hurts inside,
She just acts like she’s fine.”
“I love Auntie, I don’t want her to hurt,” said Cindy Lou.
“I know,” said her mom, “We love her too.”

Family members were still having a great time,
They weren’t worried about her,
or even of her appearance surprised.
She hadn’t made them concerned,
because they already were,
She just didn’t know
that they didn’t know what to say to her.
And the Grinch, with her Grinch-feet ice-cold on the floor,
Stood puzzling and puzzling: “How could I be adored?
I look so awful, I’m in such a bad mood.
I’ve been such a fake hostess, I even took away a gift from sweet
Cindy Lou!”

“I thought no one understood,
but I never thought to ask.
I listened to what they said,
and didn’t try to explain.
I assumed they should just know how I felt
I let them pull my chain.”
And she puzzled three hours,
`till her puzzler was sore.
Then the Grinch thought of something
she hadn’t before!
“Maybe Christmas,” she thought,
“doesn’t come from feeling great.
Maybe Christmas…perhaps….
“comes from communicating straight!
Maybe Christmas comes from accepting the love
Of those all around us, friends, and God from above.”

And what happened then…?
Well…in some parts they say
That the Grinch’s small heart
Grew three sizes that day!
And the minute her heart didn’t feel quite so slow,
She whizzed through the house, with a spirit that was no longer low.
The body still had aches, the pain didn’t go away.
But the rest of the afternoon, her spirit felt at play.

Lisa Copen lives with rheumatoid arthritis is the founder of Rest Ministries, a Christian organization that serves the chronically ill. She had a little help from Dr. Seuss on this! Visit her web site at www.restministries.org and sign up for web site updates!

It feels like I’m laying on thumb tacks,” I tell my husband as he crawls into bed beside me. “But there is nothing there! I feel so bruised.”

“I’m sorry,” he offers with a sympathetic voice, but there is little else he can do.

“I feel kind of nauseous too,” I say. “I wonder if I should get something to eat. . . But then that might upset my stomach. It’s must be the drugs. I’m sure it will pass.” As I finish my sentence he’s snoring away.

For many of us, our spouse is our best friend. If our relationship is good, we want to share our feelings with them. Even if our relationship is hurting, we feel that by explaining our pain, they may sympathize and be more loving towards us. Although we don’t want to burden them by constantly sharing about our aches and pains, when we are hurting there is a desire to be heard and have our feelings validated. By talking out loud about what we are feeling, it somehow makes the pain real— it’s no longer “all in our head.”

“Carry each other’s burdens, and in this way you will fulfill the law of Christ,” says Galatians 6:2. But at some point we need to carry these burdens to the Lord, and even a close friend, rather than just our spouse.

Despite our spouse’s lack of physical pain, he or she is grieving many losses too: the loss of watching us lose our abilities, the loss of all of the “couple outings without limits” we were to share over the years, and even the loss of being able to make it all better with a hug. Counselors agree that the top three marriage problems are money, time and physical intimacy.

Chronic illness adds a weighty burden to each of these. How can we learn how to “share our burdens” within our marriage, yet also know when to not dish out our burdens one after the other onto our spouse?

Be a team with your spouse

It’s you and your spouse “up against” the illness. You may feel like your spouse is merely a spectator, but make him or her a part of your team fighting the battle of pain. Gently educate your spouse on your illness. Allow his or her presence at doctor’s visits and provide answers to his or her questions about your illness. Acknowledge that your roles may be changing.

Connie Kennemer who lives with multiple sclerosis shares, “I am not as mobile as I used to be and often ask more of my husband. ‘Can you work at home this afternoon? Why do you have to go to another meeting?’ etc. How much should he accommodate me because my body is changing? He doesn’t always know when to stop and encourage me to try things myself. This is a constant challenge.”

Have reasonable expectations

We often marry someone who has our opposite personality style. If you need to read every article about your illness, but your spouse doesn’t, it may simply be because your spouse has a more laissez faire attitude, not because he doesn’t care.

Or perhaps you take things as they come and put off digging up information. Your spouse may accuse you of being in denial and not caring about your health because you don’t research the illness with the same passion he does. An excellent book to smooth out your communication is Personality Plus for Couples: Understanding Yourself and the One You Love by Florence Littauer.

Have information available

If your spouse is a book-worm he may want to read books on your condition; perhaps the most effective way to share something is to place sticky notes on pages of a book you’d like him to review with comments about topics you’d like to discuss. Shares Connie, “After ten years of living with MS, I am past the whiney stage, but Rex sometimes holds back; that’s when I need to ask him more questions about his feelings.”

Find ways to share about embarrassing parts of the illness, but try to keep a bit of romance alive

If your illness is going to cause you to be in the bathroom during eighty percent of the functions you attend together, you need to let your spouse know that this is part of the disease. Health organizations have brochures on symptoms; you can say, “I’m dealing with some personal matters of this illness right now; I don’t really want to talk about them yet, but they’re in this brochure if you’re wondering.” Avoid sharing every details if you can.

Find other effective outlets for when you need to vent

“I realized that I banked my frustrations of pain throughout the day and then ‘threw’ them at my husband when he walked through the door,” shares Cheryl, who lives with chronic fatigue syndrome. “I was setting the tone for our entire evening. I felt better getting it off my chest, but he felt worse, and it lasted all night. I could tell he was beginning to dread walking through the door.”

Cheryl began to put aside the last two hours of her day to spend time writing in her journal, praying and doing something she enjoyed that calmed her. “Writing in my journal gave me the chance to express my frustrations, and then prayer really began to minimize the negativity too. My husband quickly noticed a difference and it’s made our relationship so much stronger.”

Develop interests and hobbies

Too often we talk about our illness because it’s the only thing going on in our lives. Volunteer to be on a prayer chain, write that book you’ve been meaning to write, or get involved in a scrapbook club and start putting together albums for your grandchildren. You’ll find even you aren’t as interested in talking about your illness when you have more interesting things to share.

So. . . How much is too much? It’s different for each person, but learn to be objective—how many times are you bringing up your illness? How are you benefiting from talking about it more than necessary? Regardless of whether it is attention, acknowledgment or understanding, how can you get this from God instead? How is it negatively affecting your life or those around you?

Is there a better, more creative way that you can create intimacy with your spouse, other than just sharing your aches and pains? Send up a prayer to the Lord before sharing your pain

Lord, I don’t want to burden anyone else with something they can’t fix, and I really need a hug from you right now. I know how much my spouse cares about me; please give me the wisdom to know when to ask for help and comfort from him/her and when to come only to You and ask you to fulfill all of my emotional needs.

Lisa Copen is the founder of Rest Ministries and National Invisible Chronic Illness Awareness Week. She is the author of Why Can’t I Make People Understand: Discovering the Validation Those with Chronic Illness Seek and Why.