Have you wondered why the emotional part of coping with a chronic illness can sometimes be more draining than the physical symptoms? Do you not know where to turn to get past hurt feelings or feeling like no one understands? We’e put together a 90-minute time today with three women who we believe can help you find the answers to these questions.

Georgia Shaffer is a licensed psychologist in Pennsylvania and a certified life coach. For over 15 years, she has enhanced people’s lives by teaching how to identify: “What needs to grow? What needs to go?” She is also is on the teaching staff of the Christian Leaders, Authors & Speakers Seminar (CLASS) and Personality Plus. She has great insight into why we do what we do, which she has shared in her books and will be sharing with us! Twitter: @GeorgiaShaffer

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

Mary Yerkes is a professional life coach who specializes in working with the chronically ill. Diagnosed with rheumatoid arthritis and other autoimmune diseases in 1997, Mary combines years of practical experience with her professional training to help the chronically ill build meaningful and significant lives, of which illness is only a part. She is also an author and speaker. To learn more about Coach Mary and the services she offers, visit www.newlifechristiancoaching.com. Twitter: @newlifeonline

by Lisa Copen

At the age of twenty-four, a thousand miles away from my family, living in a new city, I was diagnosed with rheumatoid arthritis. Over a period of four weeks and about eight doctor’s visits, I finally found a physician who listened to me explain my symptoms and in less than two days I had a diagnosis.

Despite the terms “chronic” and “forever” I felt relieved to know the label that described my chronic pain. Few of my friends, however, shared my enthusiasm for a diagnosis. The managers at my office were more concerned about the fact that I wasn’t wearing heels to work anymore, making me look less professional.

“Encouragement” was quickly tossed around, like “You’re too young to feel so badly!” Rheumatoid arthritis was only something that could be related to the aches and pains their grandparents suffered from and a hot water bottle made it go away. They’d laugh and say, “You can’t have arthritis yet!” Those who attempted to sympathize, compared my weary body to a sports injury they had. “I have a touch of arthritis on my knee cap from football in college. It’s not fun when the rain comes, but you just have to keep pushing and not think about it.” Even well-intentioned words were enhanced by the brush off of a hand or even rolling eyes.

When you are faced with a chronic illness in your twenties, all of the typical decisions you should be making are quickly put on hold. Up until now, you were considering what kind of education to pursue, your career aspirations, relationships, and even where you will live. All these are put aside, however, as you are forced to make immediate decisions that impact the rest of your life.

Things like how well you accept (or do not) accept the diagnosis of your condition, which medications to try, when side effects are worth the risk and when they are not, and how to find the right physician. While friends are deciding which party to go to we’re at home trying to make sense out of our latest lab test results, weighing our options for alternative treatments, and deciding to have a good cry or just go to bed and hold back the tears one more night.

I tried to make each decision based on thorough research, a bit of instinct, and “worse case scenario” situations. So when I heard someone facetiously say, “You’re too young to have that illness” it felt like a slap in the face; as if they assumed I was too gullible to fight the doctor’s diagnosis and get “right one” that could be cured with a simple pill. I had to be incorrectly diagnosed, they assumed, because, after all, I “looked so good.”

Laurie Edwards, author of ‘Life Disrupted: Getting Real About Chronic Illness in Your Twenties and Thirties,’ says, “However infuriating and irrational such comments are, they only have the power to define or validate our conditions if we allow that to happen. There are all sorts of reasons why people find it easy to scorn or deny illness, especially in younger people who ‘should’ look and act healthy.”

The ambush of advertising for prescription medicines has given the general public a small education on the fact that illnesses like rheumatoid arthritis and fibromyalgia are legitimate diseases. However, with this education, comes the feeling that everyone is an expert and their assumptions about various diseases are now based on what one sees in those same commercials. For example, people with disabling illnesses can somehow be miraculously playing tennis or doing a marathon. While it’s true that a very small percentage of people may go into remission, or those just diagnosed may have favorable results, most of us are happy if we can get out of bed, get dressed and drive a car. These commercials neglect to inform people that though an illness can be controlled somewhat, the person may still be in significant daily pain.

With each chronic illness, most of which are invisible, people will doubt that your illnesses impacts your life as significantly as it does. If you are in your twenties or thirties, they will be even less likely to understand that feeling better requires much more than a good attitude or a little bit of exercise.

Lisa Copen is the founder of Rest Ministries and National Invisible Chronic illness Awareness Week, as well as the author of Why Can’t I Make People Understand? Chronic illness doesn’t have to be depressing! Subscribe to receive daily emailed encouragement from the largest Christian outreach for people with illness. Don’t miss Rest Ministries great books and gifts we’ve selected for people coping with illness.

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By Ashley

My husband, David, and I are in a somewhat unique situation with our invisible chronic illness. Although I am the caregiver, and he is the one with debilitating pain from Psoriatic Arthritis, he is the one that goes to work every day. David is a computer programmer. He sometimes works from home, and his schedule is somewhat flexible. We are blessed that he has a job he can perform even with his disability.

My job is to do everything I possibly can so that going to work is all that David has to do. I call his doctors, pick up prescriptions, duke it out with the insurance company, walk the dog, clean the house, prepare meals according to his dietary needs, get the oil changed, etc. I do it all so that when David gets home at night, he can rest. Dinner is usually ready, and he can lie on the couch watching a movie or playing on his laptop.

I used to get frustrated that David was disabled instead of me. I could be the sick one. I’m home all day anyway. David’s a great husband. He’d take care of me.

I used to think that . . .

Until David finally told me that if I was the sick one, he’d still have to go to work, and then come home and do most of the things I do for him. (Which is exactly what many caregivers have to do.) If I had his arthritis pain, I wouldn’t be able to walk the dog or grocery shop any more. David said it’s really better this way. God knows exactly what he’s doing. I may not always understand or trust God the way I should, but he is sovereign.

Matthew 10:28-31 (NIV) says, “Do not be afraid of those who kill the body but cannot kill the soul. Rather, be afraid of the One who can destroy both soul and body in hell. Are not two sparrows sold for a penny? Yet not one of them will fall to the ground apart from the will of your Father. And even the very hairs of your head are all numbered. So don’t be afraid; you are worth more than many sparrows.”

I asked David what advice he would give another couple with chronic illness. His answer is one I can’t top:

“There are days when I’m in terrible pain, and Ashley goes out of her way to help me. Then there are days when I’m in terrible pain, and I go out of my way to help Ashley.”

“A Young Wife” suffers from TMJ Disorder. She loves Diet Coke and spoiling her dog, Henry. In February of 2008, her husband, David, was diagnosed with Psoriatic Arthritis. Having a chronic illnesses as a young married couple has changed their lives. Visit her web site, A Young Wife for more encouragement.

When Lisa Copen, founder of Rest Ministries and Invisible Illness Week, had 4 joints replaced in her left hand during the winter of 2009 due to rheumatoid arthritis, she wore a scary looking outrigger splint for four months, 24 hours a day, that caught the attention of many people wherever she went. While some people awkwardly looked the other way, many approached her and started to share their stories.

Lisa quickly realized just how many people are inwardly suffering silently and then when they saw someone who they thought could relate with their pain, they opened up and were willing to share. Many conversations ended with a hug and sometimes a few tears. She had also talked with friends about how, when she saw someone with an invisible illness getting out of a car parked in a handicapped spot, part of her wanted to go over and just say “I understand” but she was afraid how they may respond. She discovered other people with invisible illness felt the same way!

Copen shares, “Most people are not looking for large support groups or 100 percent understanding when it comes to living with a chronic illness. People in pain often times just want ONE person who really ‘gets it.’ And that one person can make a world of difference.”

Notes may say “If you are wondering if someone cares, someone does,” or “Your pain may be invisible, but you are seen! Hang in there!” and then followed with the web site invisibleillness.com.

National Invisible Chronic Illness Awareness Week, which Copen began in 2002, will make 2010 the year of “Each One Can Reach One.” Thousands of people around the world are participating by leaving encouraging sticky notes anywhere they think of, from bathroom mirrors and community bulletin boards, to inside of envelopes when they pay their bills.

With nearly 1 in 2 people in the USA living with a chronic condition such as diabetes, arthritis, cancer, or fibromyalgia, about 96% of illnesses are invisible.* The hope of the people involved at National Invisible Chronic Illness Awareness Week is to remind people that although they may feel like they are alone in their pain, there are people who do care and understand the unspoken language of invisible illness.

It is easy to get involved. Grab a pen and some paper and share some encouragement in just a sentence! Add invisibleillness.com at the bottom so those who find the notes nowhere to discover more encouragement and get involved too!

Bloggers and the patient community will be participating in additional ways including blogging about invisible illnesses and conditions and attending virtual seminars online during the week of September 13-19.

*http://invisibleillnessweek.com/media-toolkit/statistics/

Lisa quickly realized just how many people are inwardly suffering silently and then when they saw someone who they thought could relate with their pain, they opened up and were willing to share. Many conversations ended with a hug and sometimes a few tears. She had also talked with friends about how, when she saw someone with an invisible illness getting out of a car parked in a handicapped spot, part of her wanted to go over and just say “I understand” but she was afraid how they may respond. She discovered other people with invisible illness felt the same way!

Most people are not looking for large support groups or 100 percent understanding when it comes to living with a chronic illness. People in pain often times just want ONE person who really “gets it.” And that one person can make a world of difference.

As the founder of National Invisible Chronic Illness Awareness Week, which she began in 2002, she chose 2010 to be the year of “Each One Can Reach One.” Thousands of people around the world are participating by leaving encouraging sticky notes anywhere they think of, from bathroom mirrors and community bulletin boards, to inside of envelopes when they pay their bills.

With nearly 1 in 2 people in the USA living with a chronic condition such as diabetes, arthritis, cancer, or fibromyalgia, about 96% of illnesses are invisible. The hope of the people involved at National Invisible Chronic Illness Awareness Week is to remind people that although they may feel like they are alone in their pain, there are people who do care and understand the unspoken language of invisible illness.

It is easy to get involved. Grab a pen and some paper and share some encouragement in just a sentence! Add invisibleillness.com at the bottom so those who find the notes nowhere to discover more encouragement and get involved too!

National Invisible Chronic Illness Awareness Week is September 13-19, 2010. We hope you will join us in spreading hope to those who are hurting!

This event is sponsored by Rest Ministries, the largest Christian organization that specifically serves those with chronic illness, which Lisa founded in 1996.

But yesterday gave me a chance to reflect on it. I was at my regular monthly appointment with my psychiatrist (who I absolutely adore), and he was asking me the normal questions about my physical health as it affects my mental health and everything just sort of hit me. And I started to cry.

All the stress I had been burying so I could make it through the hospital stay and infection and 10 days of at home IV antibiotics came bubbling up to the surface. I didn’t shed many tears because my illness, Sjogren’s Syndrome, damages my tear production… among other things. And that made me cry harder.

And then finally dealing with my immediate past made me think about my immediate and not so immediate future. And I cried because, when living with a chronic illness, the future is so unknown and that is just plain scary. This round of IV antidepressants – Rituxan – doesn’t seem to have worked. That is enough to make me cry in itself. It is just so disappointing.

I am unsure what I should do next? Should I risk suppressing my immune system further and more potentially dangerous infections like the one I’m just recovering from and get another round? Will it even work? Should I try something even stronger? Or should I not take the risk and learn to accept my life as it is?

Is my new “normal” getting around in a wheelchair and being in pain and exhausted all the time with debilitating and life threatening symptoms? Is that how I’m going to be forever? If this is how I am at 25, what will my life be like at 50? Will I ever be independent again?

Will I need a caregiver forever? And the scariest of all… how long is forever if I continue to be this sick? Will I die from my autoimmune diseases and not with it?

But after crying this out of my system I realized I need a “new look” on many levels. Yes I have, an invisible chronic illness, but I can’t LIVE my life if I’m thinking this way all the time, so I don’t. But I did need to get it out of my system once and a while.

The rest of the time I am thankful for what I still do have. I am usually happy. I have a wonderful caregiver in whom I’d be found a great friend as well. I have the most wonderful and supportive community of online friends a girl could ask for. I have a sister who does everything she’s able to support me. A dog who loves give me cuddle therapy. My writing, creativity, faith in myself, and most importantly HOPE!

I also got myself a “new look” in a more literal sense. A new haircut and a new outfit.

National Invisible Chronic Illness Awareness Week is so important to raising awareness about invisible chronic illness.

Lauren is a 25-year-old with an unusual collection of autoimmune diseases that includes arthritis, Autoimmune Pancreatitis, Autoimmune Hepatitis, Fibromyalgia, and Sjogren’s Syndrome with neurological involvement.

In her blog Novel Patient, she writes about her struggles dealing with sometimes dangerous new treatments, balancing relationships with family and friends, her difficulty adapting to life in a wheelchair due to debilitating arthritis, and most importantly her quest to maintain hope and faith in herself through it all.

She also started Novel Patient Community, a social network and free blogging platform for patients with chronic illnesses. She am also an avid scrapbooker, alternative reality gamer, and an aspiring novelist writing my first book – a coming of age story set in a dystopian future.

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Well-meaning friends and family, not understanding the unique challenges of the chronically ill, don’t know what to say or do to help. Here’s how you can help those living with chronic illness:

• Release expectations and be flexible. For someone living with chronic illness, it is possible to feel well one day and sick the next, making last-minute cancellation of plans unavoidable. Expect unpredictability and extend grace.
• Spend time with the chronically ill when its convenient for them. Meet at a time of day when they feel best. Those living with chronic illness struggle with regular attendance at work church, and social gatherings. Pain and fatigue take their toll, leading to physical and emotional isolation. Take time to visit those living with chronic illness at their homes or invite them to lunch—at a time that works best for them. A short visit over coffee or tea can make a world of difference in the life of someone struggling with chronic pain.
• Send notes, cards, and small gifts in the mail. Books, CD’s, or magazines can provide tremendous encouragement to those unable to leave their homes due to pain and fatigue.
• Affirm the individual’s worth and value. Feelings of insignificance and low self-worth often accompany chronic illness. Verbally affirm those you know who live with chronic illness. Don’t “assume” they have it “all together,” even if they look like they do! Speak words of affirmation, based on who they are not on what they do.
• Listen. Be a “safe place” where those suffering can express frustration, anger, or discouragement
• Understand when those living with chronic illness arrive late or leave early. The chronically ill struggle with excessive fatigue, making long meetings and traveling to conferences and events difficult. Allow for late arrivals and early departures.

National Invisible Chronic Illness Awareness Week brings attention to an important but often overlooked issue–the challenges faced by the one in two Americans who live with chronic illness and conditions. It is worth both celebrating and supporting!

Author and speaker Mary J. Yerkes has lived with rheumatoid arthritis and ankloysing spondylitis for twelve years. She writes and speaks frequently on “living well” with chronic illness. Visit Mary online at her web site.

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[ stock photo

My older daughter and my son both have postural orthostatic tachycardia syndrome, a form of dystautonomia. My younger daughter has not yet been diagnosed but has suffered from painful joints and low blood platelet counts for over four years. Could be lupus, could be arthritis but we don’t know yet.

All three are bright, articulate, nice looking teens or young adults. All have faced isolation and misconceptions from peers and adults.

When we choose to have children, we know that it is our job to care for those children, to make their environment safe, to kiss the boo-boos and make things right.

“]

[ stock photo

When doctor after doctor diagnoses a somatic condition because it doesn’t fit into his or her little box of symptoms, mom continues to research and make phone calls in search of that one doctor who can help her children. I was blessed to be able to find the right doctor for my kids with POTS. I’m hoping we’ve found the right doctor for my other daughter.

Family and friends don’t understand illness that doesn’t fit the norm. What they don’t understand, they question. After enough questions, you begin to doubt yourself. This is true of both the child with the invisible illness and the caregiver.

I want people to know that the best thing they can do for those with chronic illness and the family members who care for them is to pray and to offer encouragement without offering advice or judgment. I also want to say that I am so proud of my children.

They are strong and they will overcome the obstacles they face. I thank God for each one of them and I pray that he will continue to guide and direct them.

National Invisible Chronic Illness Awareness Week is important because it helps people to remember to not judge based on outward appearance.

Deana Tritch is a wife, mother and homemaker. She is also a miniaturist and you can see her work on her blog, www.delightfulminis.blogspot.com. She is currently trying to single handedly educate her community about dystautonomia, the condition that two of her children have. She lives in rural Indiana with her husband, son and a few furry family members. Her daughters are currently in college and the oldest one is planning her wedding.

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Chewing gum is absolutely forbidden when you have jaw trouble. Yet, even close family members still offer me gum, and I’ve had TMJ Disorderfor five years.

My husband, David, has severe Psoriatic Arthritis. Folks look at him and see a healthy young man. People that know David well forget how bad he’s hurting because he doesn’t use a cane or a wheel chair.

One example in particular sticks out in my mind of how easily we forget about people with invisible illness. David and I both see several of the same doctors. One day, I saw one of our mutual doctors who had just seen David a few moments before.

He was asking me how my day had been, and I mentioned my mother, mother-in-law, and I had trimmed the trees in my front yard. The doctor said, “Hey, be careful. David’s going to be upset you’re doing his job!”

Oh, how quickly we forget.

Even I forget sometimes and ask David to move a piece of furniture. Or, someone will invite us to do something like attend a Mavericks game, and I accept the invitation, only to realize later that there’s no way my husband can handle that much walking, let alone sitting in a hard metal chair for hours.

I always feel so guilty when I forget. David is bedridden at times. How could I forget he has a chronic illness like arthritis? How could I suggest he wakeboard a few months after a weekend of having to dress him?

People forget. God does not.

Isaiah 44:21 (NIV)
“Remember these things, O Jacob, for you are my servant, O Israel. I have made you, you are my servant; O Israel, I will not forget you.

Isaiah 49:15 (NIV)
“Can a mother forget the baby at her breast and have no compassion on the child she has borne? Though she may forget, I will not forget you!

We are so blessed that God is not only omniscient, but God actually cares about his children’s troubles.

It’s okay if you forget that I have TMJ Disorder or David has arthritis. But please, try to be kind and considerate to everyone. You never know what they’re going through or what invisible illness they may have.

National Invisible Chronic Illness Awareness week is a great way to educate friends, family and churches. Many people think that only elderly people get sick, or that having a chronic illness means you did something wrong.

A Young Wife suffers from TMJ Disorder. She loves Diet Coke and dessert. She and her husband David were high school sweethearts. They have a dog named Henry that they spoil rotten. In February of 2008 David was diagnosed with Psoriatic Arthritis. Having a chronic illnesses has changed their lives. It is a strain on them financially and emotionally. Visit her blog here!