My Family Doesn’t See The Benefit of Me Doing Online Ministry When Bed-Bound

I spend a great deal of time in bed due to my illness and have made some amazing friendships and really feel like God has given me a ministry on the Internet reaching out to other people who are hurting and encouraging them. I am on Facebook, twitter, and other social networks. But my family sees this as an aimless waste of time and tells me that I don’t have real relationships with these people so I can’t truly make a difference. Do you think they are right? And if not, how can I convince them that people online need the Lord too and I may be someone they reach out to? -Renee (real name withheld)

Renee, I disagree with your family. God has given us a wonderful tool to use to glorify Him. I have been a support group leader for people who suffer from dysautonomia, a rare/chronic illness for over a decade. One person in particular I finally got to meet in person after chatting and supporting them on the internet for a whole decade. And I can say that it was not a waste of time, she was and is a real person who God lead me to help time and time again.

I just had a book come out nationwide on living with dysautonomia. There is an article on the book and they interviewed Floy my internet friend. She stated how I was always there for her, when her husband walked out, when her son went to college, when she had to go to the hospital and when she was depressed. So, yes I made a difference in her life. That is living proof that you can make a huge impact through the internet.

What is important to remember is that we are here on earth for God and not ourselves. So we need to answer to God. I have found that serving other dysautonomia sufferers is what God has called me to do. I actually work for God, and although I suffer greatly from my illness it gives me great joy, hope and love when I help others for our Lord Jesus Christ.

The fact is the only one you need to answer to is God. Your family members are human, the bible clearly says not to lean on men for strength, but on God.

When I first became ill in 1997 I searched daily for someone who suffered from the same illness. One day I signed on the computer and I had a message from a girl who was suffering just like me. I sobbed with joy that there was someone else like me. That is when I knew God wanted me to reach out to others and help them. I feel Renee you are right in Gods path and that by helping others you are working for God and I consider the best job in the whole world.

Lynn Fox Adams, author of “God Needs ME: Living with Dysautonomia,” has been bed ridden for the past 15 years with a rare chronic condition called dysautonomia. When she lost her job, family members, savings and all of her physical abilities she turned to God and has found that He is all she needs. She has had the honor of being featured in a variety of newspaper articles and magazines and has spoken on Capitol Hill in front of house and senate. You can contact Lynn at lynnfoxadams@charter.net .

The Grinch & 2 Spa Prizes Next Week

It’s that time of the year again when we share our annual Grinch story! Only this year we want to hear a few sentences from you too!

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!

View The Whole Shebang! 64-Page HopeKeepers Magazine

Merry Christmas! If you haven’t yet had a chance to check out our current issue of HopeKeepers magazine, now is the time.  Our December issue is completely free and available to read online in its digital format, or you can out up to 15 pages at one sitting.

Please help us spread the word by posting this to your Twitter, Facebook, etc. We would love for others to know about HopeKeepers magazine!

Reflections on How People Respond to Visual “Pain” Experiences

It had been many weeks since I have been to church. My rheumatoid arthritis had been flaring for months now. I had been off of my main medication since August of 2008 due to infections and then pending surgery.

While my husband and son left on Sunday mornings I would attempt to log on to the church’s web site to watch the broadcast. Some days it worked. Some days it did not.

But a couple of weeks ago, after I had had joint replacement surgery on my left hand, my family decided to go on a Saturday night service when my body would be less sore. Any outing would be nice and I was eager to the back and receive some refreshment from the Lord.

We got there a few minutes early and I went into the bookstore and wandered around. I got a few odd looks from curious people who quickly turned away. I smiled back and people nervously may meet my gaze enough to be polite.

While my husband went to check my son into Sunday school, I sat down outside. About six men who were ushers all stood within a few feet with their microphones in their ears, laughing about doing push ups. They glanced over me a few times, obviously wondering if they should talk to me or not. I smiled, as if to invite conversation, but then they turned away back into their safe huddle.

Many people walked by and did not even look at me. I’m used to that as I am not some beauty, but still, some people have said my splint resembles something from Edward Scissorhands. A few people glanced over at the contraption on my hand but never smiled or looked up at my face.

My husband and I joined my mother in the church and sat down. During introductions after worship one woman in front of us leaned over and said something like “Boy, that looks like it hurts.” I smiled and said thanks and explained I had gotten new joints.

The speaker was Lieutenant General William Boykin (Exceptional! You can listen here.)

It was inspiring, and exciting to listen to. At the end of his message “Who Should I Send?” he had everyone close their eyes and people who wanted to accept Christ into their hearts were to raise their hand. We all said the prayer of acceptance of Jesus into our lives together.

As the service ended I grabbed my pillow that I had brought to rest my arm on and stood up. My husband was the first of us to leaves the pew and was nudged forward before I could get out of it myself. People streaming out of the church resembled a southern California freeway and I was protecting my hand too much to risk merging into the oncoming traffic.

I yelled to husband to go ahead and go get Josh because I couldn’t “get out.” I waited about 60 seconds to merge into the aisle. Guarding my arm, people still brushed by me. Finally I got into the aisle and had to holler back to my mom, “I will meet you outside” as I was pushed along.

All I wanted to do was glance at the book table to see the price of the book (Never Surrender) and then to get outside, but people wanted to get to the table ahead of me and also to the long line for the speaker to sign the book. There was confusion over two lines: one to buy the book, the other to get the book signed. So at times I just stopped and tried to wait for the flow of traffic to go by in the opposite direction so that I could get out of the auditorium.

But then people beside me and behind me impatiently said “I need to get by you…” At one time I said with irritation, “I am just trying to get out too and can’t seem to get through.”

At last I got outside. As the evening went on however, I reflected back on my experience. There is the human side of me that will admit to that the thought occurred to me if I was a conference with Joni Eareckon Tada’s ministry, Joni and Friends, I would be the speaker, and people would be lining up for me to sign their books, as in the past. But tonight, I was just an inconvenience, someone in the way, someone who would remind people that life was imperfect and they too are vulnerable.

I thought about the fact was that the church had just had an amazing speaker who just invited people to accept Jesus into their lives to help them through the valleys and challenges that we will face in this lifetime on earth.

What if I was not a believer and my family brought me to church hoping that I would accept Jesus into my heart during this recovery of a joint replacement?

What if I was just so encouraged by the speaker that I had actually raised my hand to become a Christian .. and then I was unable to even get out into the aisle?

As I got outside I ran into a couple of friends. One said I had good “color” (I told her it was the makeup.) Another who said something like “So it’s a lot better now, right?” (I didn’t say it but I thought “Uh, no. I have about five more months of therapy and weeks still in this splint.”)

I have always tried to follow my belief that people are always more important than programs when it comes to my ministry. Programs are necessary and needed, but people are always more valuable. When I mentioned my mixed emotions to a friend she emailed me back, “When I had MS problems a few summers ago I went to church in a wheelchair just so I could go. Not ONE of the pastors (and they all saw me there) came up to us. Most people circled around us like I had the plague. Our small group attendees were warm and that’s all. Boy do I know how it feels to be walking and feeling like protecting myself from being knocked over.”

I’m not looking for a pity party. I’m not even looking for people to run over and have a conversation about the weird contraption on my hand. For example, it was obvious the men who were ushers felt somewhat uncomfortable, not knowing if they should “intrude” and ask me what had happened to my hand, or if they should ignore it.

My degree is in sociology and so I can’t help but look at the different experiences I am having in a variety of environments. And it saddens me when strangers at the pharmacy or the grocery store show more compassion than anyone in my church body. We have become a society that is so afraid of appearing “nosey” that we don’t even walk up to a sister in Christ and say, “Goodness, that must hurt! How are you doing?”

And at the same time, I hear about many of your experiences too and find that when people believe they can offer a “cure” they are eager to get involved and share their thoughts about your physical condition. Maybe when our condition looks too complicated they shy away since they don’t feel they have answer?

What is my reason for sharing this? I asked myself that before writing it, as I don’t want to have it seem as though I am complaining, or looking for sympathy, or expect Christians to be perfect. To be honest, I don’t even know exactly what I want. I debated about shring this experience with you because I love my church and I know it was a small individualized experience.

I think my true reason is that God has given me the gift of being able to have a ministry like Rest Ministries and has placed me in the position of trying to be an advocate for people with chronic illness or invisible illness.

I want you to know that I don’t have all the answers, but I am experiencing new things each day, both challenges and blessings.

And when you walk into your church and no one will look you in the eye, or they appear to be disinterested — even when you are visibly struggling, I want you to know that is nothing personal. I am experiencing the same thing. And I am also asking myself the same questions as you, like, “What am I doing wrong?” Or “Why do people not seem to care?”

I love the scripture Psalm 138:8: “The Lord will fulfill his purpose for me; your love, O Lord, endures forever— do not abandon the works of your hands.”

We are in this together — both the journey of chronic illness that God has set us on, and also the steps towards gently educating our church leadership on the emotional and spiritual pain that accompanies the physical pain that many suffer from. But regardless of the weaknesses of man, God’s love will endure forever. We will never be abandoned.

Lisa Copen
Rest Ministries Director

New Symbol Needed For Invisible Disabilities?

The international symbol for disabilities is nearly always the wheelchair, but only a small percentage of people with a disability use a wheelchair on a daily basis.

Laura Brydges hopes to change this and has a Facebook page set up to spread the word. (Must be Facebook member to see)

She explains. . .

What do you think of this symbol as an international symbol for hidden disabilities? It is meant to be used as an ID card carried by people with hidden disabilities. They can show it to identify themselves and their needs when they are having trouble coping or when they need help. The back of the card would be individualized, allowing them to state their specific disability, and what assistance they need.

She says. . .

Help this symbol be adopted as the international symbol for hidden disability. Many people with hidden disabilities need help, and with this symbol, they can identify themselves and ask for help when they are having trouble coping. Join as a fan.

Find out more at her Facebook Page and show your support if you are interested by becoming a fan.

YOU Hurt My Feelings!

Have you felt a great divide in a relationship that could compare with the parting of the Red Sea? In the midst of trying to redefine who we are with chronic illness, we often encounter a torrent of remarks that are hurtful.

Sometimes, the “wounds from a friend can be trusted,” (Proverbs 27:6), because the remarks are made out of ignorance: “If you just prayed about it more, God would heal you.” It hurts, but we know they aren’t purposely trying to hurt us. You may even feel abandoned as friends and companions avoid you because of your wounds (Psalm 38:11).

Or perhaps you’ve felt that the comments from friends or family are outright abusive, and you leave with tears flowing down your cheeks, wondering what went wrong and how you can be so misunderstood.

Recently experiencing conversation that left me feeling deeply hurt, I delved into the Scriptures to discover how I could resolve it─ preferably the relationship, but at least peace in Christ and forgiveness. Even when the circumstances feel unfair to us, we must be willing to open up our heart to learning how to grow in Christ through it.

These are the steps I’ve worked through to gain peace and understanding in challenging relationships.

[1] Acknowledge that God is allowing this circumstance to occur in your life.

Pray that He will reveal His purpose through this situation. Stop dwelling on the one you feel has wronged you. Yes, your feelings were hurt, but don’t dwell on them, repeating the conversation over and over in your head. This is not about you!

Romans 8:6 says, “Obsession with self in these matters is a dead end; attention to God leads us out into the open, into a spacious, free life” (The Message). Read God’s Word, pray for discernment and wisdom in interpreting what you read, and ask God to be your strength. God is enough. You don’t need the other person to apologize in order to find peace, nor do you have to “get even” in order to have resolution. This is between the Lord and you.

As Renee Bondi mentioned in an article in HopeKeepers Magazine, think about such things: “whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable–if anything is excellent or praiseworthy,” (Philippians 4:8) Make lists! You’ll begin to feel better.

[2] Take a close look at your own actions, without comparing, “I wasn’t nearly as mean as my friend was!”

• Honestly ask yourself, “How could I have made the situation worse?
• How could my actions have been misinterpreted?
• What would I do differently if I could do it again?”

Galatians 6:4 says, “Each one should test his own actions. Then he can take pride in himself, without comparing himself to somebody else. . .”

Ever lay awake at night going over the conversation? God understands and says, “When you are on your beds, search your hearts and be silent,” (Psalm 4:4). Ask God for forgiveness. Ask Him to convict you of your wrongdoings so you can ask for forgiveness of the individuals and of the Lord.

[3] Do not seek revenge or act cruel to the person, despite how they may have hurt you.

It’s not in your hands, but in the Lord’s. The Bible tells us, “Do not repay anyone evil for evil. Do not take revenge, my friends, but leave room for God’s wrath, for it is written: ‘It is mine to avenge; I will repay,’ says the Lord. On the contrary:  ‘If your enemy is hungry, feed him; if he is thirsty, give him something to drink. In doing this, you will heap burning coals on his head.’ Do not be overcome by evil, but overcome evil with good,” (Romans 12:17, 19-21).

[4] Respond to the one who has hurt you with a peaceful, calm heart.

You will represent a God who gives mercy. Ironically, God doesn’t just let one off the hook; He creates a turmoil of emotions within the other person. When someone feels angry and guilty and you respond with kindness, it can feel like burning coals on their head, because they are dealing with shame over their own actions. Not fun!

[5] Acknowledge that you only have so much control over the situation and do your best to resolve it, responding with grace.

Those around us watch us to see how we—as believers─will respond to an unjustified attack. If we respond no differently than non-believers, how have we represented God?

Romans 12:18 says, “Be careful to do what is right in the eyes of everybody. If it is possible, as far as it depends on you, live at peace with everyone.” By choosing to do your best, as far as it depends on you, you are refusing to play the victim role, but rather taking initiative in using this as a growth opportunity.

When we choose the victim role of “Why are you doing this to me?” our spiritual growth becomes stagnant. Remember, “the Lord is close to the brokenhearted and saves those who are crushed in spirit,” (Psalm 34:18). Don’t miss out on an unexpected blessing by turning away from God or seeking revenge because of your pain.

[6] Anger is a natural emotion, but do not sin in the heat of the moment.

Ephesians 4:26 says, “In your anger do not sin.” Remember, “Love is patient, love is kind. It does not envy, it does not boast, it is not proud. It is not rude, it is not self-seeking, it is not easily angered, it keeps no record of wrongs,” (Corinthians 13:4, 5).

A high standard to live up to but God tells us, “If you do not do what is right, sin is crouching at your door; it desires to have you, but you must master it,” (Genesis 4:7). Only with God’s help we can master our natural sinful nature and show love. It’s not easy but, “Perseverance must finish its work so that you may be mature and complete, not lacking anything,” (James 1:4).

[7] Be accountable to someone who can be objective and offer encouragement and advice.

“If one falls down, his friend can help him up. But pity the man who falls and has no one to help him up!” (Ecclesiastes 4:10). A friend or mentor can keep you accountable to seeking God’s will and praying for resolution. “See to it, brothers, that none of you has a sinful, unbelieving heart that turns away from the living God. But encourage one another daily, as long as it is called today, so that none of you may be hardened by sin’s deceitfulness,” (Hebrews 3:12,13).

[8] Pray to forgive the one that hurt you.

Even if the one who has hurt you has moved on, passed away, or desires no relationship with you, ask for God to provide forgiveness in your own heart so you can let it go and have more intimacy with the Lord. “For if you forgive men when they sin against you, your heavenly Father will also forgive you. But if you do not forgive men their sins, your Father will not forgive your sins,” (Matthew 6:14, 15).

Kind of blunt, isn’t it? God knows we need to forgive in order to be fully His. You can read more about why forgiveness is good for both your soul and your body.

[9] Pray for the one that hurt you—with compassion.

It may take time to get to this point, but “Be diligent in these matters; give yourself wholly to them, so that everyone may see your progress,” (1 Timothy 4:15). Ask the Lord to work in your friend’s life and to soften your heart towards him. Ephesians 4:2 says, “Be completely humble and gentle; be patient, bearing with one another in love.”

[10] Learn how to set healthy boundaries.

Proverbs 12:26 tells us that “a righteous man is cautious in friendship.” If you’ve been deeply hurt by someone, it may be time to set new boundaries, and these will likely be resented so be careful that when you do set boundaries: “Do not let any unwholesome talk come out of your mouths, but only what is helpful for building others up according to their needs, that it may benefit those who listen,” (Ephesians 4:29).

Use “I” language, “I will be able to come for one hour, but then I will have to leave,” “I love you but I won’t discuss the topic of ___ with you. Is there something else we can talk about?” “I appreciate you sharing your feelings with me, but I won’t be able to accommodate your requests.”

Regardless of the response you receive, “Get rid of all bitterness, rage and anger, brawling and slander, along with every form of malice. Be kind and compassionate to one another, forgiving each other, just as in Christ God forgave you,” (Ephesians 4:31, 32). As Robert Schuller says, “There are vast untapped resources of faith that can be discovered only in adversity.”

Lisa Copen is the author of Why Can’t I Make People Understand? Discovering the Validation Those With Chronic Illness Seek and Why and she is the founder of Rest Ministries, Inc. She has lived with rheumatoid arthritis since 1993.

Related

Hurt Feelings Really Do Cause Physical Pain

Does your illness flare when you get your feelings hurt or feel left out?

One study has proven that hurt feelings aren’t all in your head! Researchers in California found a physiological basis for social pain through a study which monitored the brains of people who thought they had been “cut out” of a computer game by other players.

The shock and distress of this rejection registered in the anterior cingulate cortexthe same part that also responds to physical pain. (Science, Oct. 2003)

So when people say something that can really “get to you…” try to let it go and pray about how to best respond. It’s not just your emotional state that can be impacted, but your physical state and pain levels too.

Related articles

• Gene Linked with Physical Pain Sensitivity Associated with Social Rejection Sensitivity (barbarany_9.blogspot.com)

Talking to Our Spouse About Our Illness: How Much is Too Much?

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.

Responding to “You look fine”

As a person who suffers from an invisible illness, what is the best way to react when people around me comment that I look fine?

That is a hot topic isn’t it? We have a few posts on our web page where people have addressed this question too. And you may want to read the article at our sister-site, National Invisible Chronic Illness Awareness Week, “54 Ways You Say You Respond to “You look so good!”

I think that it depends on your relationship with the person. Is this someone close to you who you feel comfortable being a bit vulnerable? If so, consider sharing, “I know it may sound silly, but for some reason when you say that, even though I know you mean it as a compliment, it FEELS like no one understands the actual pain I am in. Rather than saying that, if you said [fill in the blank] I would feel a sense of relief that you are one of the few people who actually ‘get it.’”

If it’s someone who is an acquaintance, it’s not really necessary to explain. Or if you want to, though it’s natural to want to throw out a sarcastic remark, I think the gentler we are in our response, the more likely people will try to understand.

Even though you may not be close to the person, she may have a relative who is very ill. Your response may open her eyes to what her loved one is going through. So laugh with your ill friends about what you could say, but offer grace when it comes to the words you actually do say.

30 Things About My Invisible Illness You May Not Know

We’ve all seen the list “20 things about me” “50 thing about me you didn’t know…” They can actually be interesting if you want to get to know the person better! We’ll we’ve got one I haven’t seen anywhere yet, “30 Things About My Invisible Illness You May Not Know.”

Just copy and paste it below and put it up on your blog, send it to your friends, paste in on Facebook (if it’s too long put it in your “notes” section.)

THEN… post a COMMENT BELOW with the link to where you posted it and we are going to choose 2 people to receive a prize Sept 5th, 2009.

Let’s spread the word about II Week this way and it’s a wonderful way to share a little bit about your life. And don’t forget to add the last paragraph for people know where to find us!

You can see the answers of Rest Ministries founder, Lisa Copen, here. Remember, don’t get stressed out over this. Each answer should be just a sentence, two at the most. You can always go back to it later and journal about it with deeper answers if you wish to ponder some of the questions.

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30 Things About My Invisible Illness You May Not Know

1. The illness I live with is:
2. I was diagnosed with it in the year:
3. But I had symptoms since:
4. The biggest adjustment I’ve had to make is:
5. Most people assume:
6. The hardest part about mornings are:
7. My favorite medical TV show is:
8. A gadget I couldn’t live without is:
9. The hardest part about nights are:
10. Each day I take __ pills & vitamins. (No comments, please)
11. Regarding alternative treatments I:
12. If I had to choose between an invisible illness or visible I would choose:
13. Regarding working and career:
14. People would be surprised to know:
15. The hardest thing to accept about my new reality has been:
16. Something I never thought I could do with my illness that I did was:
17. The commercials about my illness:
18. Something I really miss doing since I was diagnosed is:
19. It was really hard to have to give up:
20. A new hobby I have taken up since my diagnosis is:
21. If I could have one day of feeling normal again I would:
22. My illness has taught me:
23. Want to know a secret? One thing people say that gets under my skin is:
24. But I love it when people:
25. My favorite motto, scripture, quote that gets me through tough times is:
26. When someone is diagnosed I’d like to tell them:
27. Something that has surprised me about living with an illness is:
28. The nicest thing someone did for me when I wasn’t feeling well was:
29. I’m involved with Invisible Illness Week because:
30. The fact that you read this list makes me feel:

Find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers Sept 14-18, 2009 at www.invisibleillness.com

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• 6 Reasons I Support Invisible Illness Week (invisibleillnessweek.com)
• Start Your II Wk Blog Today! (invisibleillnessweek.com)

DID YOU FILL OUT THE MEME ABOVE? If so, tell us where to find your answers in the comments below and by listing your blog, FB page, whatever, you will automatically be entered to win a prize! We are selecting 2 prize winners Saturday 9/5.

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