I have a very hard time with the emotional part of endo, as sometimes I think this is the worst part of it for myself.
Even though I am so much better, some days I get up and am tired of the fight. I need to get everything right to feel good! all my vitamins, progesterone cream and it is very important that I eat enough throughout the day, since I am hypoglycemic or my blood sugar will go down and I will feel horrible. So my health weighs on my mind quite a bit. I tend to not want to be social at all when I am the least bit under the weather. In the past I missed best friends weddings, showers..because of it-horrible!
It is different now though, I have started to reach out to people the last year and I tell some what is going on with me, actually I sent a few of my church friends to this site to read my story. Well lets just say they were shocked! clueless because I never told anyone. Probably before they just thought I was antisocial. I am so good at dismissing how I feel. I am trying so hard to reach out, but it is such an effort! When I mention something about my health and their is silence or they change the subject!! I want to scream .. Hey!!! DID YOU JUST HERE WHAT I SAID!!(because that just took so much effort for me to tell you about it)
I guess they just do not know what to say really, but that is the worst part for me. I also know that it cannot be about me all of the time and sometimes I feel guilty about burdening someone else with my problems, so finding a balance is hard.
I have found that the ones who care the most of course are the ones with this same disease as I know you out their reading this can relate to what I am saying and perhaps the ones who have been through other health trials or suffering seem to have a lot of empathy. Suffering produces compassion for others! Ok so true, but did we need to get that much compassion I must say.
"Praise be to the God and Father our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all of our troubles, so that we can comfort those in any trouble with the comfort that we ourselves have received from Christ.
2 corinthians 1:3-4
My friends at church are the most compassionate people I have ever met, so I find that I can be comfortable around most of them. I can say I am not feeling good and just sit their quietly and I do not need to avoid the social situation anymore because they understand.
For me to go to a party where I do not know people when I am not feeling good 100% would be horrid for me and so I avoid it! This is just me though, as it is important to meet new people and be social and not isolate ourselves. I rely on the Lord for strength as he is always their for me and guides me in each situation I hope that I follow.
Basically it is very hard to deal with social situations, but we need to try to find ways..it is easy to be with the ones who understand, but new friends? new occasions? maybe others have some more ideas of ways to deal with those...
Well thank you for listening as I know you can probably relate. Now that my health is improving, I am getting much more social, but I wanted to be sure to save this article to remind me and hopefully help you.
4-3-2006 Update from Lori: Wow, it used to be really rough. I am so much better now. Through it I learned to rely on the Lord for strength. I can do all through Christ who gives me strength. Phillipians 4:13
This was written by Andrea!
Some days are good and some are sad.
Some are happy and some bad.
As, I wait in patience for the Lord to help me, I calmy pray.
Dear Jesus what is it that you bring to me today?
Will this be another trial or the sweet innocence of another day?
Will I lay in the pastures and have no worries at all?
Or will I hear your voice and my name you call?
God when will I know?
When will you let the results show?
God please give me the strength to stay strong.
Please do not let another doctor tell me nothing is wrong.
Lead me to the path in which you want me to go.
Please let me get an answer and let the results show.
More Articles Here:
1) When the pain is Invisible
2) I'd like some Joy now
3) When are we ready to reach out
4) Accepting the Illness
5) When you decide not to parent
6) When exhaustian takes over
Reprinted from ...And He Will Give You Rest
When the Pain is Invisible:
But you look so good!" "I can tell you must be feeling better. You look great!" "I'm so glad you were able to come. Thank goodness you finally are getting some relief." To a healthy person, none of these comments seem unusual or insincere. Our friends are simply trying to find the right thing to say. Of course, they really do believe that you must be feeling better or you wouldn't be out of bed.. Those of us who are ill, however, understand that if we stayed in bed until we felt better, we would never leave the bedroom and we would miss out on life. So we get out of bed. We put our energy into finding something to wear that doesn't clash too badly; something that looks acceptable, despite the wrinkles. We search for the lipstick that we used last week. We dig through the closet looking for something that resembles a shoe. And we go on. We go out.
"But You Look So Good!" Once we are out and about, people assume that we woke up feeling wonderful, that we jumped out of bed and are without pain. Says Donoghue and Siegel, authors of Sick and Tired of Feeling Sick and Tired, "An added difficulty in adjusting to being handicapped with invisible chronic illness (ICI) is the phenomenon of appearing well." Connie, a woman who lives with multiple sclerosis, and her friends are already planning their costumes for Halloween next year. They are going to dress up in "a costume" that portrays how they feel, so finally when people see them they might understand how they feel.
Sometimes We Want to Appear Normal Many chronic illnesses are invisible, causing feelings and frustrations that are different than what a person with a visible condition may experience. "It seems that we all want to appear normal. We all want to give the impression of strength, health and vigor," shares Camille Lewis, a graduate student at Indiana University who lives with Cushing's syndrome. "I've debated and debated about getting some walking help--a cane or whatever-and the one thing holding me back is my ego. I don't want to appear to be in pain. I want to be normal, even though I'm not."
Sometimes We Want People to Acknowledge the Pain One would believe that pain would be socially understood and somewhat sympathized with. Although people do sympathize with pain, it is under circumstances that we believe are severely painful, such as childbirth, trauma, late stages of cancer, etc. People cannot relate with the chronically ill since the individual is not screaming, crying or grimacing. We, who live with chronic pain, often walk, talk, and function normally (as far as can be seen) so it is assumed that the pain is overstated. Migraines, for example, are often misunderstood as being just a bad headache.
For those who experience them, their whole world comes to a halt until the pain subsides. There is a constant struggle to try to have people know what we are going through, without seeming to search for sympathy and pity.
Men who live with illnesses, such as fibromyalgia, may feel self-conscious. Their illness is primarily seen as a women's disease. They appear to be sluggish and unmotivated when they can't do physical tasks. Women are being diagnosed with chronic fatigue syndrome in huge numbers and yet the illness is still called "yuppie flu" and treated with anti-depressants. The immense fatigue that one suffers from is rarely recognized or understood by their friends and family around them. A recent Dear Abby column featured a letter written by a woman who's sister had recently committed suicide following her family's denial of her chronic fatigue syndrome diagnosis. When the young lady had told her sister about her diagnosis, the sister had responded with "When you have a husband and a family then you'll know what chronic fatigue syndrome is!"
We want People to Assume it's Just as
Bad as it is, but No Worse than it Is Living with an invisible chronic illness can mean constantly trying to redefine your condition. We can't keep up with the rest of the world, and yet the world sees no excuse for our lack of participation. Some would argue that having an invisible chronic illness could be a blessing, as one has a choice to tell others or remain an assumed normal person. The disadvantage of this is trying to convince others that the disease is legitimate and painful. Many people think "Aren't you overdoing it... or playing it up a little bit?" People's observations do not conform to their expectations as to what a sick person should look and act like. Therefore, they are quick to become intolerant and suspect that the symptoms are overstated. It is often not only the disease itself that is painful, but also the emotional effects of having the illness discounted, having one's respectability and judgement questioned, and dealing with the criticisms of others. It is extremely necessary for the person with chronic illness to feel that his disease is validated, even by people that he doesn't know. One example of this is "the handicapped parking space confrontation."
The Need to Feel Validated There are over 40 million people who live with chronic illness in the United States, most of the illnesses invisible. Oftentimes, illnesses make it difficult for the person to walk far and so handicapped placards are issued to them. The placard holders are soon often confronted by accusatory looks, stares, notes left on their windshield and even approached and questioned about their obvious lack of wheelchair. For those who have experienced any one of these situations, it can be a humiliating and frustrating situation. None of us feel as though we should have to justify our illness to anyone, and yet we are so angered by their obvious ignorance and their belief that we are abusing the "privilege" (that we wish we weren't applicable to receive). Although they are complete strangers, we still have a desire for their understanding and validation.
What to do? So what do we do with these frustrations and the lack of understanding that we may sometimes feel that other people have? David Biebel, author of If God Is So Good Why Do I Hurt So Bad? writes in his book, "Because God is now here, I am not an only child. I have a friend, closer than a brother, who understand the path I walk because He has walked it too. His heart beats with mine. His heart breaks with mine. His hands reach out, through their own pain, to touch my aching soul and let me know that someday it will all become clear-but for now to keep on walking, like He did and like others have before me" (p. 72).
Lisa Copen is the founder and director of Rest Ministries. She lives with rheumatoid arthritis and fibromyalgia and is the author of When Chronic Illness Enters Your Life Bible Study.
I'd Like some Joy Now. Where Did I put It?
Joy. When was the last time you laughed until your side hurt from laughing... and not because of your typical aches and pains? I am the first to admit that despite physical ailments, life is good. I have happy moments and time with friends in which I feel joyful, but I also must admit that I laugh much less than I would like. Illness has a way of aging us much too soon. It makes us too serious at times, because we have to think about how everything will affect our body. There is no "running off to Vegas," —at least not without making sure that our prescriptions are filled, we have shoes to walk in or a wheelchair reserved. Illness takes away the ability to say, "We’ll be there!" and being assured that we won’t back out.
So how can we put aside the feelings of heaviness that accompany illness and find the joy that Tim Hansel describes in his book, You Gotta Keep Dancin’? "Joy has so much to do with how we see and hear and experience the world. It is not to be grasped, but given away. It is not to be contained, but shared... Joy, above all else, is a selfless quality which is magnified when it is shared and minimized with when is it selfishly grasped."
A particular commercial makes me cringe every time I hear it. An older man says, "Life is good when you have your health..." I want to scream at the television, "Life can be good even when you don’t have your health?" Do we need reminded that we should feel depressed and the absence of a good life just because we don’t "have our health!!" Hansel writes, "Joy has more to do with who we are than what we have, more to do with the healthiness of our attitude than with the health of our body." Is this what Paul was getting at when he wrote, "Consider it pure joy, my brothers, whenever you face trials of many kinds..."? Joy is not dependent on our circumstances. A Yiddish Proverb says, "What soap is for the body, laughter is for the soul."
What makes you smile? What makes you laugh? Friends of mine, who live with chronic illness, recently adopted two new puppies and despite the challenges of taking care of them, they say, "They have brought laughter back into our house. There is life again in our home." Hansel suggests keeping a folder of jokes or sayings that bring you laughter.
When God promised Sarah a child she laughed, but God did give her what He promised and Sarah said, "God has brought me laughter, and everyone who hears about this will laugh with me" (Genesis 21:6)...
We may believe that our circumstances are not funny, but rest assured, God does have a sense of humor and He may express it in your life at the most-unexpected moment.
What could God promise you that would make you laugh? Health? Financial security? A healed relationship? Just when you think, "That’s impossible!" God may be tempted to say to you, "Why do you laugh?" (Genesis 18:13).
Take a moment this week to search out moments that make you smile. Start a laughter folder. Read the cartoons. But most importantly, when you pray, ask God to give you joy. Ask him to multiply those joyful moments in your life. God will bring more laughter into your life. Expect it!
Accepting the Illness
oh now this is a hard one for me, accepting it that is. Lori
What? Accept the illness? Most people choose to see the acceptance of a chronic illness as either complete capitulation or total vigilance. In reality, it is neither. Acceptance of an illness can be an integral part of getting on with life. The dictionary defines acceptance as: (1) to receive something offered. (2) to answer affirmatively to; (3) to undertake the duties of. The acceptance of a chronic illness is never done willingly or gladly, but it is done out of necessity.
In comparison, "capitulation refers to the person who, under the sentence of ill health, goes to pieces and essentially renounces the idea of remaining himself. To accept, means to keep a firm grip on yourself and to work toward safeguarding your integrity. Acceptance implies a refusal to be condemned or give up and become a useless person in the face of diminishing health. There is an element of non-acceptance in this kind of acceptance" (Werner-Beland, 1980, p. 1976).
If you have just been diagnosed with an illness, you are not ready to accept it. There are other emotions that you need to feel and deal with. There will come a time, however, when you start to see yourself making gradual changes. One day you'll realize that you've let go of some of the fear and anger; you'll find that you are dealing with the difficulties of living with a chronic illness just as you deal with other difficulties in life. You will know then that you are on you way to living with a chronic illness, and not surviving a chronic illness.
When we come to the point of accepting our illness, the people around us often become frustrated and determined to keep "fighting for us, since we aren't going to fight for ourselves." Oftentimes, they just don't understand that learning to accept the illness is the only way to have a sane life.
"I have a friend who keeps telling me if I just admit that I hurt, God will take away the pain," says Betty. "I am a Christian and I believe in prayer, but also read that sometimes we just have to endure. She is always trying to get me to go to a healing service with her. She will call and ask me how I feel and then proceed to quote me scriptures and end up acting like I'm really not as bad as I feel."
Accepting our illness is a difficult step. What does God have to say about all of this? I am still trying to understand. Sitting around a table with a group of friends, we discussed, "At what point do you know that it is God's will for you to stop praying for God to take the thorn away and heal you and start praying for wisdom and guidance to deal with the thorn in your side?" I won't attempt to answer this question, but there are some things from God's word that may help put the possibility of accepting your illness
Some things to think about...
By acceptance can we gain hope?
God not only tells us to accept our suffering, but rejoice in them. Most days, this can feel like quite a stretch, but God promises that through rejoicing in our sufferings, we will learn perseverance; perseverance produces character; character produces hope. Hope will never disappoint us, because God has poured out his love into our hearts (Romans 5: 3-5).
By acceptance, can we find God's will?
God calls us to be living sacrifices. (Romans 12:1-2). Our bodies are Holy and pleasing to God, regardless of what physical shape they are in. God tells us not to worry about conforming to the world's standards, but to allow our minds to be renewed. Following these steps, we will be able to "test and approve" what God's good, pleasing, and perfect will is.
By acceptance, are we allowing
ourselves to be pruned as God desires?
God is going to prune us whether we like it or not. John 15: 1-2,4 "I am the true vine, and my father is the gardener. He cuts off every branch in me that bears no fruit, while every branch that does bear fruit he prunes so that it will be even more fruitful...Neither can you bear fruit unless you remain in me."
What is acceptance?
How do we know if we've accepted our illness?
This list has been adapted from the original list in Successful Living with Chronic Illness,retitled Celebrate Life, by Kathleen Lewis.
When Are We Ready To Reach Out?
We may want to reach out, but when we don't know the answers, how do we pass on comfort?
"If God would just explain this all to me, maybe I would be able to live with it," shared Cindy over a cup of tea. "It's so frustrating to have to go through all of this pain, but even more frustrating to not be able to explain it-to myself or anyone else." How often I have felt the same way. I like to live by logical rules and I like a plan to follow. I belive that one of the reasons God allowed illness into my life was so that I would have to put my plan aside and simply follow him one day at a time.
A verse that is often quoted in churches, small groups and Christian support groups is "Praise be to the God and Father our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all of our troubles, so that we can comfort those in any trouble with the comfort that we ourselves have received from Christ," (2 Corinthians 1:3). Sometimes this verse brings people in pain peace, but other times it brings confusion. How can we live joyfully and brings others comfort knowing that we must suffer to be of any use? There are four clear, simple steps in the verse that will help us better understand this process.
1 We need to have ZEAL for God. This can be difficult, but the first part of this verse, "praise be to the God and Father of our Lord Jesus Christ," reminds us that in all circumstances we have an opportunity to choose to praise God or withhold our praise. The Apostle Paul writes this verse while he is going through difficult times, and he had a "good excuse" to just skip this part, but he chooses not to. We may not all feel zealous about our life right now, but surrender those feelings over to Christ and He will take comfort in your genuiness.
2 It's vital that we realize that God truly FEELS.* "...the Father of compassion and the God of all comfort," It has been said, "Never doubt in the darkness what God has told you in the light." God loves you and cares for you, and although things seem difficult right now, His promises to bring you joy, hope and a future remain true.
His desire is to bear our burdens and for all to know Him. He hurts when He sees the world today. Despite this, our comfort is not His greatest goal, but rather his concern is our conformity to be like Christ. To understand what we are experiencing and to be willing and able to reach out to others, we must be able to understand God's feelings in all of this.
"I once went to see a speaker who was going to talk about her experience with cancer," Kathy told me. "But rather than encourage others, she explained how she now tells people that the only thing that they can depend on is themselves, because when it came down to it, depite her faith, she still got cancer!"
If you are still in the process of sifting through this theology and all of the emotions that go with your experience, talk to a pastor or mature Christian that can help you process them. Don't mistake the diversion for the destination! If you are still doubting that God loves you, you may encounter difficulties when trying to encourage others about God's faithfulness.
3 God wants to HEAL us. "...who comforts us in all of our troubles..." Healing means different things for different people. Not everyone is going to experience a physical healing. Tim Hansel writes in his book, You Gotta Keep Dancin', "I was healed when I gave up the desire to be healed..." God says he will comfort us in all of our troubles.
It's so easy to feel abandoned by God when we can't attend our daughter's dance recital. It's easy to feel alone while we wait for the test results. When the doctor doesn't believe the depth of our pain and we cry all the way home from the doctor's office, it's hard to believe that God is there, trying to comfort us-but He is.
I once heard of a mother who had a "tear jar," and every time her child would start to cry she would run and get the jar and try to "catch" the tears. She wanted to her child to know how precious the tears were and she discovered a great parenting tip along the way-her child quickly became more interested in the jar than the tears, and it was impossible to fill up the jar. This mother loved her child and although she wished the tears weren't there, she treasured them just the same. So too does our God care and comfort when we cry, reaching out to catch our tears. "You have taken account of my wanderings; Put my tears in Your bottle. Are they not in Your book?" (Psalm 56:8).
4 When we have praised God, we know that He feels compassion, and that He comforts us in all our troubles; we are given a gift of compassion for others and we want to pass on the comfort that we have received. "...so that we can comfort those in any trouble with the comfort that we ourselves have received from Christ." We feel that, despite the unanswered questions we still may have, God has REVEALED that there is purpose in the pain. One could say that, as Christians, we have a responsibilty to pass on the comfort that God has provided. By passing on the comfort that God has given us, we find that a part of His plan has been revealed.
"Nothing in the world can replace the effectiveness of Christians who have been wounded in the pruning process, speaking and living authentically," writes Larry Kreider, author of Bottom-Line Faith. "Although these people may not understand what is happening to them, they know they are part of a grand design."
Six-year old Sara was browsing in the toy aisle as her mother shopped nearby. "Come on, Sara. We have to go," her mother called. As they were paying for a few items at the cash-register, Sara's mom glanced down at the bulge in her daughter's shirt suspiciously, just as a bean bag animal dropped out. "Sara! What are you doing?" her mother exclaimed.
"It's for Stacy. Tomorrow is her birthday, and I wanted to give her a gift." It can be tempting to want to give a gift without paying the price. But, by living with a chronic illness and surrendering each day over to God, you are sacrificing. And because of your sacrifice, the price you have had to pay, you have a great gift which you are called to share. Your gift is larger than the gift that any non-beliver can ever give because your gift is as a result of your faith in Jesus Christ.
As the HopeKeeper groups of Rest Ministries continues to grow across the country, I feel a joy and protectiveness about my leaders of these groups. I wish that I could take each one out for lunch and sit across the table and just get to know them. As I was reading the other day, I came to a passage that I felt was perfectly suited for each HK leader and to each of you who have reached out to others, even when in pain.
"This service that you perform is not only supplying the needs of God's people but is also overflowing in many expressions of thanks to God. Because of the service by which you have proved yourselves, men will praise God for the obedience that accompanies your confession of the gospel of Christ, and for your generosity in sharing with them and with everyone else. And in their prayers for you their hearts will go out to you, because of the surpassing grace God has given you. Thanks be to God for his indescribable gift" (2 Corinthians 9:12-15).
Each one of us has a purpose. We all have a way in which we can reach out to others. And along the way, we discover a wonderful thing-that when we reach out to others and offer them comfort, the feelings of joy that we feel in return cannot compare to anything else. No book or new CD, no cup of tea or bubble bath will ever give the peace and joy that you will experience when you pray for others, and reach out to them, offering the comfort that we have received from Christ.
When You decide not to parent:
Some of us have children… some of us do not. Some of us plan to have children, some of us adopt… some of us listen to God and He says, "let the dream go."
"If I take a couple of years off after graduation and go back to college, I could have my masters degree by the time I'm 25," I enthusiastically told my mom. Despite raising me to believe I could do anything I put my mind to, her heart-felt response was, "But I want you to have a baby by the time you're 25."
Well, I am pushing 32 and the baby has yet to arrive. I married at 27, tried to have the baby in the following years and my husband and I have now been waiting for eight months to adopt. They say the "average wait" is a year and a half.
So why an article about not having children? As the director of Rest Ministries I understand that there are many husbands and wives who have made the difficult choice to not pursue parenthood. It's a choice that is more than difficult, because they wanted children. Illness may have made bearing a child impossible. For some, the idea of caring for a child seemed like a burden too great to bear. Above all else, though these men and women feel that God did not say, "Not yet," but rather, "no."
I believe that since we are a ministry that encourages people in the various aspects of their lives, we are called to address the ups and downs of parenting when you have a chronic illness. However, for those of you who pick up this newsletter and read about parenting, this article is an attempt to provide you with a feeling of "someone understands," and not a twinge of pain of not having a child.
I do not feel qualified to write this article; the sacrifice and surrender that has been made by those who have decided to not parent is something that I have not experienced first-hand. However, I have experienced infertility. I have felt the grief, the frustration, the darkness and the feeling that no one understands how much strength it takes to get out of bed and paste a smile on my face, when babies seem to be multiplying everywhere I look. Women who are qualified to write this article have not been able to emotionally commit to putting their feelings down on paper and having them shared with so many. I understand. So I have asked them questions and have agreed to share their feelings with you without sharing their identity. I hope this helps you know that you are not alone.
Sharon's Story: I have always wanted children; It was a matter of when, not if. When I was diagnosed with lupus my first question to the doctor was "what about children?" He assured me that children were still a possibility and that he would monitor my pregnancy carefully. My husband and I decided to wait until I got a handle on my illness and started to feel better. That time never came. After many long talks and a lot of prayer, we have decided to put this dream aside and start the grieving process. More than anything in this world a child should want to be wanted, to be loved. I know it sounds selfish, but as much as I want a child, my life is a mess and just being a wife drains me. I don't believe it's God's will for me to be a parent. I don't know why or how He's going to get me through accepting this, but I am confident that in time it will make some sort of sense. I know God's providing a peace about my decision for my husband and me despite the fact that it still hurts.
Christi's Story: "You've got plenty of time." "Just relax and it will happen." "You're letting your illness win if you don't have a baby." "You can always get help." When you asked me to share my story, I had just received an email from an old friend that said, "Are you every going to have that baby? You're not getting any younger!" I don't even know where to begin to explain it all to people-and then I get mad because I really don't owe anyone an explanation. I don't have plenty of time. While a healthy person may, my illness gets worse every day. Every year that passes means that I am going to have less quality time with a child and more "down time" having to make excuses about why mom can't play. Secondly, I have relaxed, as much as one possibly can while being poked and prodded, tested and drugged. I've been given dirty looks by lab technicians and doctors that have told me I have no business having a child. Thirdly, my illness is not winning. It's taken a lot from me, but I've always made my own choices based on what is best for me, not on what my illness dictates. Lastly, while some people may be able to freely hire help, we can't afford it, and likely never will. If I have a child, I want to raise him or her.
For now, I believe that it is not in God's will for me to have a baby or even adopt an older child. I simply cannot care for a child in the way that I believe God wants me to. He has allowed me to be a "big sister" for an eleven-year-old girl next door who has a difficult family life. I feel like God has given me the chance to make a difference for her and be someone special in her life. For now, I am learning to find peace about not being a mom; but I'm not putting God in a box-I open to Him changing His mind.
Donna's Story: You asked me to share a bit about deciding to not be a parent. I am honored to share this with you, but I don't feel like I am in the position to share any words of wisdom because I am still learning how to cope with it every day. My husband and I truly wanted children, but as the years passed and my illness progressed, both us begin to wonder if children were going to be a part of our future. We got a puppy and I'm it's mommy. For now, unless God sends us a sign we are not going to pursue having or adopting a child. It still hurts. I will go days without thinking about it and then wake up one morning and suddenly remember that I won't ever hear someone call me mom. The grief will hit me so hard, I will stay in bed half the day. I cry and pray and eventually get up and get on with the day. I still allow myself to grieve. I still ache when knowing that all my friends are seeing each other at MOPs (Mothers of Preschoolers) and I am at a doctor's appointment figuring out which medication to try next. It's not fair. It's not easy. I am just taking one day at a time and relying on my faith that God will get me through it.
Many of us have felt the words spoken by Rachel. "When Rachel saw that she was not bearing Jacob any children, she became jealous of her sister. So she said to Jacob, "'Give me children, or I'll die!'" Genesis 30:1. While a part of our dreams may die when we decide not to have children due to our illness, we do not die. We live on. And despite the paint hat we may experience, God still calls us to serve and to be faithful.
God has given us people to care for and reach out to. He has given us children as neighbors, nieces and nephews, and we are to teach these children about His lovingkindness. Even though they are not our own, they are His, and we may be the only example of God's love that they see.
Lisa Copen is the founder and director of Rest Ministries. She lives with rheumatoid arthritis and fibromyalgia and is the author of When Chronic Illness Enters Your Life Bible Study.
In my life friends have come and gone like autumn leaves in a fall rainstorm; momentary blazes of color, until the ill-wind blows. With every leaf that fell from my fragile friendship tree, they drained the sap of life from my very heart. I struggled to protect myself from the onslaught of good intentions that lacked the conviction and perseverance necessary to stand by me in the darkest, bitter storm blast.
Fair-weather friends and even family spoke of help and encouragement, but they grew weary in the day-in and day-out nurturing of my life. I grew afraid to seek the sun, or trust a kindly word, because when the novelty of my illness wore off these friends became phantom memories, as elusive as a cobweb in the sun.
They pulled away and turned away and their absence became a roaring echo in the chambers of my heart. The silence of their good intentions accentuated my lonely cries, until at last, I could cry no more...
But when the tears were dry and the trust was gone, God sent you, Jesus, an unexpected breath of fresh air in the midst of the stagnant emptiness. And in time I learned that we were as alike as we were different, and the differences only added body to our friendship.
You really cared and suddenly I wasn't alone anymore. You will never know how often the sound of your voice helped me to face one more pain-racked day. There have been so many times that I just wanted to die and you provoked me to live. You have been a much better friend to me than I to You and I am so grateful that God sent me the gift of your friendship. So often you are the still, small voice that God has used to motivate me just one more time.
I do not know how to properly or adequately thank you for the gift of your friendship. Words seem insufficient and there is so little I can say. But I hope that you know how grateful I am and I hope that my life reflects in some way just how thankful I am. You are precious beyond measure. You are my best friend, Jesus.
When exhaustion takes over
One of the hardest things in which to adjust when one is diagnosed with a chronic illness is the fatigue that accompanies it. It is an exhaustion that I had never experienced until I was diagnosed with a chronic illness a few years ago. I was relieved to be diagnosed, believing that having a name for my fatigue and pain would validate those days when I move a little slower at work. I hoped that people would stop saying, "Smile!" or "You sure look tired today." If I tried to explain that my illness tended to make me tired, they would respond, "Oh, I'm tired too. I had a late night." Is there any way to explain that my tired is different than their tired?
The word exhaust is from the Latin root word, which means "to draw out." We may often experience that feeling of being "used up" or "having nothing left." It's scary when you realize that you may likely never have the kind of energy you once did.
Remember, just because we may be tired does not mean that we are weak or ineffective in our ministry for God. He can work through us even when we are exhausted. So, what do we do when we just can't do it all?
(1) We can accept the help of others. When we are used to doing it all for ourselves and others too, it's difficult to ask for help or to accept it when it's offered. We need to let go of finding our value in what we can accomplish for ourselves (like how big a dinner party we can throw and how much of the house we can clean). Instead, we need to consider what God wants us to accomplish.
When the Israelite army was attacked by the Amalekites, (Exodus 17: 8-15) Moses said he would stand on top of the hill with the staff of God in his hands. As long as Moses held his hands up to God, the Israelites were winning, but when he let them fall, the Amalekites began to win. So was Moses able to pull through the long hours holding up his hands? Not without the help of Aaron and Hur.
"When Moses' hands grew tired, they took a stone and put it under him and he sat on it. Aaron and Hur held his hands up-one on one side, one on the other-so that his hands remained steady till sunup" (v. 12). God's power was flowing through the fingertips of Moses, and yet God still allowed Moses' arms to become tired. Was that so Moses had to accept help? What would have happened if Moses had said, "Don't worry about it, guys. I can handle it. Go on down the hill and I'll come later when I finish this battle." God was able to work through Moses when Moses accepted the help of others.
(2) Know that true strength comes only from God. "He gives strength to the weary and increases the power of the weak. Even youths grow tired and weary, and young men stumble and fall, but those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint." (Isaiah 40: 29-31).
As I was talking with a friend the other day, she remarked how, before her illness, she was an extremely busy person, on the go wanting to do it all and more. God has slowed her down. She has been forced to change her lifestyle, and yet she has grown closer to God because of it. When God gives strength to the weary, he doesn't promise where we will feel that strength. It may be in our relationship with him or others and not in our body. Only He knows what is perfect and what we truly need.
(3) We can realize that God is able to work in our lives despite our exhaustion. One of the most often-told bible stories is of Jesus talking with the Samaritan woman at the well. She became a believer and left to follow Jesus. Her testimony to others brought many people to God. How did Jesus meet this woman? "Jesus was tired from his journey and sat down by the well." (v. 6).
Even Jesus became tired. He wanted to sit down to rest and have some water, and God used His son's fatigue to bring many people to know Him. God can use us under any circumstances if we will allow him the opportunity. It may not be in the way we would like. We probably won't have a bungy jumping ministry, but God will work out His plan for our lives in His timing. It's just so hard to wait and see what that plan is!
(4) We need to take comfort in the fact that God never tires. Thank goodness we have such a wonderful God, and that He will never grow weary. You may remember as a child, your father coming home from a long day at work. He would walk in the door looking tired, but as soon as you ran through the house, yelling, "Daddy's home! Daddy's home!" his weary eyes would begin to sparkle, and soon he had plenty of energy to play until you went to bed. We all have those days where we want to put the covers over our head and not get up. Some of us have days where we would like to get up, but our broken bodies won't allow it. We must stay put.
During these times, it's especially comforting to know that our God will never be bedridden; He will never put the covers over His head and say, "I can't deal with my children today." "The Lord God is the everlasting God, the creator of the ends of the earth. He will not grow tired or weary." (Isaiah 40: 28). When I am truly tired, my eyes crave darkness and stillness; my body longs for the warm comforts of my grandmother's quilt.
Perhaps the hardest thing to accept is that even if these longings are fulfilled, I will still awake wishing for more sleep, never feeling refilled. Spiritually, however, I can be filled by going to God and asking for His comfort, His strength, and the renewal of my spirit. When I go to the Father and am filled with his peace, I can find rest that no amount of sleep will ever replace. "I will lie down and sleep in peace, for you alone, O Lord, make me dwell in safety." (Psalm 4:8).
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Dear Parents, Partners, Friends, Families, Employers & Doctors:
We have spent the last years of our lives apologizing for being stricken with a disease we did nothing to contract, and we can do it no longer. We are asking - again - for your understanding. We are not responsible for not living up to your expectations the way you think we should. What you seem to fail to realize, is that you are just as much a part of the cycle of the disease as we are, because you are not getting the whole of our person and our capabilities.
We are not "lazy," we are not "whiners," we do not make the pain up "in our heads."
We have Endometriosis.
We know that we look healthy on the outside, and that is sometimes harder to accept than if we exhibited the disease in our every day appearance. What you don't see is what our organs look like on the inside, and you don't see what living with it has done to our emotional well-being.
When we call in sick, it's not because we need a mental health day or to "go shopping." It's because we can't get out of bed from the pain. Do you think we like letting our careers suffer? Would it be easier for you to understand if we said we had cancer and looked the part?
When we get emotional and cry at the seemingly silliest things, or get angry for even less reason, it's not because we are "flaky women." It is because we are taking drug therapies to stall this incurable disease, or perhaps it's because we have come close to the breaking point after dealing day in and day out with the pain for which there is no defined cause or absolute cure.
When we can't have intimate relations with our partners, it is not because we don't love you or want to. It's because we can't. It hurts too much. And we aren't feeling real attractive right now.
When you, our parents, can't understand that since you are healthy, we should be too, but aren't - try harder. We don't understand it either. We need your support more than anyone's.
When we can't go to family gatherings or accept social invitations, it's not because we don't wish to share in your fun. It's because we feel like pariahs. You are all having such a nice time with your children and loved ones - we can't remember the last time we had a nice time, or the last time we were pain-free. We can't have a nice time with our children (some of us), because we were robbed of that chance before we were old enough to even care about having them in the first place. Do you think we need to be reminded of our battle with infertility by watching you and your babies? Or for those of us who were blessed enough to be able to conceive, do you think we want a constant reminder that we never feel well enough to spend enough quality time with our children, or worse - that we might have passed this disease down through our genetics onto our daughters?
When you married us, you didn't know that we meant the "in sickness and in health" part literally, did you? We bet you were counting on at least a 50/50 split of that combination, rather than the 90/10 ratio you got. You are our caretakers, the ones who drive us to and from our doctors, countless surgeries, and emergency room visits. You are the ones who hear us crying in the night and see us break down during the day. You are the ones who wait on us hand and foot after surgery. You are the ones that go for months on end without sharing our beds with us. You are the ones that deal with our infertility right along with us. We strike out at you when we are hurting and angry, and you take it in stride. You are perhaps bigger victims of Endometriosis than even we are. You are appreciated more than words can ever say.
Don't give up on us now.
As a medical professional, we are coming to you for help. We are asking you to do the job you were trained to do and ease our suffering. We do not need you to tell us that we are imagining the excruciating pain we live in, or worse yet, that it is "normal for a woman to hurt." Keep up with your research, find the cause of this disease and better yet, find a cure! Stop taking the easy way out and drugging us into oblivion so that we will quiet down. We want answers and it is your job to provide them. You were the ones that took the oath to heal - why do we have to try to do your job? Do you understand what it means when we tell you that we literally can no longer live a normal life and care for ourselves and our families? We're not drug seeking; we're answer seeking.
Are you not up to the challenge to find the answers?
To those we have called friends all our lives, why have you deserted us when we needed your compassion and understanding the most? Do you see the selfishness of your actions? When we can't get together with you, it's not because we don't like you or we don't care - it's because we are no longer capable of enjoying healthy leisure time. Our minds are consumed with our next doctor's appointments, what surgery we are going to have next, and why we feel so sick all the time. This is not about you - it never was and it never will be. It is about us. Please try to remember what the term "friend" means.
Try to walk one minute in our shoes. We have fought a war for the better part of our years. We are faced daily with physical pains we can't understand and mental anguish we can barely cope with some days. We face a society daily that doesn't even know the word "Endometriosis," much less the ramifications of living with the disease. We have to face uneducated and unsympathetic doctors who tell us "it's all in your head", and "have a hysterectomy, it will cure you", or "get pregnant, it will cure you", when we know that it won't and have been dealing with infertility for the last however many years. Can't you see that?
We have to fight to get medical treatment that insurance companies don't deem necessary, or worse, we deplete our savings because aren't able to obtain proper care unless we pay for it ourselves and travel thousands of miles to the rare specialists that are few and far between. We have to have surgery after surgery and subject ourselves to horrific medications just to be able to get out of bed in the morning. This is not a conscious choice we made, it was the hand we were dealt. It is enough of a war we wage just to try and live with some modicum of normalcy - don't make it harder on us by not seeing the reasons why.
Endometriosis is a disease that affects all of us.
Take the time to learn about it and understand. If you can do that, and you can join us in the battle for a cure, then we can one day return to our old selves and live a normal, painfree life. We can have healthy relationships with our loved ones. We can stop taking the painkillers that numb our suffering to a degree and become part of the living again.
Please don't judge us and declare that we are all the things we are not - until you have lived with this disease ravaging your mind and body, you cannot speak on it.
Whatever doesn't kill us makes us stronger, someone once said. While Endometriosis may not kill our physical body, it tries like hell to kill our spirit. It tries to kill every hope and dream we ever had of doing the things that make us happy. All of us are out here searching for a cure to put an end to the disease...and we are holding our heads high in spite of Endometriosis and fighting it every single day. We are asking you to take part in that battle and work with us beating it. Wouldn't it be nice to have back the daughter, wife, friend or loved one you once knew?
Think about it.
~The Sentiments of Millions of
Endometriosis Survivors Around the World~