Living With Invisible Illness: 5 Ways To Get Over Aggravations

by Lisa Copen

“You look so good! You can’t be as bad as you say. You look perfectly healthy.” “You think you have fatigue? Try working full-time plus having four children! Then you’ll know what chronic fatigue is.” “I think you’re spending too much time thinking about how you feel. You need to just get out more.” “If you really wanted to get well, you’d at least try that juice drink I gave you last week. It won’t hurt to try it.”

And the remarks go on. . . and on.

And our heart aches.

You may be surprised to hear that nearly 1 in 2 Americans has a chronic illness or physical condition that affects their daily life. The range of diseases and included everything from back pain to fibromyalgia, arthritis to cancer, and migraines to diabetes. Oftentimes, one of the largest emotional stumbling blocks for people who suffer from illness is the invisibility of the pain. About 96% of illness is invisible. This means that the person who suffers from the chronic condition show no outward signs of physical pain or disability, nor does he or she use an assistive device like a walker or wheelchair. But the incredible pain each day can be disabling within the confines of the home.

If you have an invisible illness here are 5 tools to help let go of some of the frustrations:

[1] Let go of expectations. This may be a life-long process, but you will consistently find that people will always disappoint you, as no one is perfect-including you! Remember, you don’t understand the difficulties that your friends are going through, whether it’s a divorce, the death of a loved one, a loss job, an ill child, etc. Your illness is significant in your life. Even when people care, they still will have significant things going on in their own lives.

[2] Find supportive friends. Is there someone in your circle of friendships who is constantly belittling you or suspicious about your illness? Is he is beyond listening and instead spreading gossip about how he saw you at the grocery last week and you looked perfectly fine? This should be a relationship to let go of or, if it’s a relative, distance your self as much as possible. Illness can help us easily prioritize our friendships and that way we can spend our limited energies with those that mean the most to us.

[3] Search for the joy in your blessings. Instead of dwelling on thinking about how badly you feel, find ways to bring more joy into your life, even if it’s just appreciating the small things. Explore what makes you happy and what you are doing when a natural adrenaline takes over and you have extra energy. That’s likely where your passions are! Focus on bringing more of this into your life. And don’t let your limitations stop you. For example, maybe you once loved to garden. Now you could grow a few potted flowers or hire a neighborhood teenager to plant some vegetables and set up an automatic sprinkler system for them. You could even start a garden consulting business.

[4] Use your talents and skills for things you care about. If you’re no longer able to work because of your illness, you may feel like your skills are going to waste. Maybe you’ve always wanted to write children’s books or be a business consultant. Find a place to plug in and do some volunteer or part-time work for to be able to use these skills in an area where you feel passionate. Instead of focusing on what others aren’t providing you with that you want so much, follow your dreams and give that gift to yourself.

[5] Encourage someone else. You personally know how hard it is to live with illness and to feel like no one understands. So take time to be vulnerable with someone else who is going through this. Whether you meet someone through an online group such as National Invisible Chronic Illness Awareness Week’s message boards, or through your local support group, volunteer your time and expertise (yes, you’re an expert on living with invisible illness!) and use it to make someone elses journey easier and you’ll find your own is more enjoyable too. Are you frustrated that no one at your church thinks your invisible illness is real? Rather than stop going to church, find ways to educate them, such as a column in the church newsletter or brochures about National Invisible Chronic Illness Awareness Week. These say what to say/not to say to a chronically ill person.

None of us can change another person or make someone care-but we can educate them and give gentle advice. We must also continue to work on ourselves. You’ll find that even when you want to change it can be a real challenge, requiring discipline and motivation for a better life. You owe it to yourself to find joy despite your illness, and by focusing on how you can change your circumstances, instead of change other people, you’ll be much more personally rewarded.

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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Can One Person Make A Difference? The Story Behind The Notes

When Lisa Copen had 4 joints replaced in her left hand during the winter of 2009 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!

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.

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Connect with Other II Week Participants

Do you wish to connect with other participants of Invisible Illness Week? If so, we invite you to join the Invisible Illness Week GROUP in the Sunroom social network of Rest Ministries.

During the week while 4 seminars are happening each day, this is where we will also send you if you want to ask more questions of listeners on a particular seminar topic, if you have questions for the speakers that were not answered during the seminar, etc.

We are asking our speakers to sign in and check to see if anyone needs any additional information. If our speakers have handouts, this is where they will post a link to them.

The Rest Ministries social network, The Sunroom, has over 1300 participants and is a Christian environment for those with chronic illness. We understand that during Invisible Illness Week some of those involved may have different faiths or not have a religious preference. We ask that everyone be respectful of one another. If you do not wish to participate after Invisible Illness Week you can delete your membership.

Another option is to leave comments at the Blog Talk Radio web site where other listeners or the speakers can connect with you.

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Invisible Illness Week Features Virtual Conference and Fresh Awareness

CONTACT: Ms. Lisa Copen, founder & director
858-486-4685
www.invisibleillness.com

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Invisible Illness Week Features Virtual Conference and Fresh Awareness

Did you know that nearly 1 in 2 people in the USA have a chronic illness?* And despite assumptions that most illnesses are a mild inconvenience, if you ask those who live with a disease or chronic pain, you will find it drastically changes their lives. An invisible illness can be a disease that is nearly always unseen like chronic fatigue syndrome (CFIDS) or heart disease to one that progresses from invisible to visible, such as multiple sclerosis or rheumatoid arthritis. One thing is certain: those with chronic illness desire to connect with one another and live life to the fullest. . . but they may not be able to travel and sit through a typical conference.

This is where National Invisible Chronic Illness Awareness Week, September 14-20, 2009 excels, offering a 5-day virtual conference, where all speakers are available to listen to LIVE or later (all session are archived.) Monday through Friday, 9/14-9/18, anyone can log on to www.invisibleillnessweek.com and hear illness experts 4 times a day and even call in with their questions after the presentations. Last year’s shows have had over 12,000 listeners and are also available on iTunes.

There are a wide variety of topics including:
• Finding Health Insurance Coverage with a Pre-existing Condition
• Coping with Chronic Illness in Your Marriage
• Having Your Own Business When You Are Chronically Ill
• Simplifying Your Home and Housework
• Parenting When You are Chronically Ill – Chaos and Confessions

The theme this year is “A Little Help Gives a Lot of Hope.” Thousands of people have joined the cause through social media tools like blogging for the cause, a blog tour, a Facebook Cause and fan page, and Twittering about the event with the hashtag #iiwk09.

Lisa Copen, 40, is the founder of National Invisible Chronic Illness Awareness Week and has lived with rheumatoid arthritis and fibromyalgia for sixteen years since the age of 24.

“We all live with a variety of symptoms and the severity of the pain often changes or moves from one area to another on a daily basis,” says Copen. “But there is an underlying feeling that those we love the most don’t fully comprehend what we cope with minute to minute or the choices we make just to ‘have a life’. This can be more devastating to some than the actual physical pain.”

Copen, who was the recipient of the Audience Choice Our Bodies Ourselves Women’s Health Hero Award this spring says, “We hope to unite some of the millions of people who live with chronic pain and illness silently by offering an oasis of hope and understanding. Illness is never fun, but we hope to connect people to encourage one another, as well as host some fabulous workshops to help people live their best life possible.”

For details visit the web site, http://www.invisibleillnessweek.com

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*Source: Chronic Care in America: A 21st Century Challenge Revised

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Invisible Illness Week Comics

You may feel like crying, but instead, let’s laugh together! We have more in common than we know. You can make your own comic strip at Bit Strips. Be sure to email us a copy and we just may share it here!

You are free to copy and paste these to your own blog, site, etc. just be sure to link it back to www.invisibleillnessweek.com – Thanks!

More coming soon!

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Invisible Illness Week Founder Wins Women’s Health Hero

Lisa Copen, founder of Rest Ministries, Inc., the largest Christian organization specifically for those with chronic illness or pain won the Our Bodies Ourselves award for Women’s Health Hero: Audience Choice. On May 11, 2009 Our Bodies Ourselves announced the 2009 Womens’ Health Heroes, honoring the work of women’s health advocates worldwide, marking OBOS’s first annual effort to spotlight the diversity of care, education and activism in communities around the world.

See OBOS’s announcement, as well as the nomination and kind comments for Lisa here:
http://www.ourbodiesourblog.org/womens-health-heroes-2009

“Every day millions of people worldwide do incredible work to improve the health and well-being of women, and we want to bring attention to their efforts,” said Our Bodies Ourselves Executive Director Judy Norsigian. “Many of our heroes accomplish so much with very few resources, particularly on the frontlines of public health, where gaps in the quality of care and healthcare access remain persistent.”

The inaugural group, chosen from close to 100 nominations, represents seven countries: United States (13), Canada (2), Australia, The Netherlands, Nigeria, United Kingdom, Ukraine.

Jenny Prokopy of chronicbabe.com who was a special guest speaker in 2008 and will be participating in 2009 as well was also selected as one of the Womens Health Heroes.

Copen, who began Rest Ministries in 1997 after living four years with rheumatoid arthritis and not finding illness support that was faith-based says, “It’s a great honor to win this award, but more exciting is the opportunity to have the opportunity for Rest Ministries to gain the exposure. We sponsor National Invisible Chronic Illness Awareness Week each September and have a five-day virtual conference online. I hope that this award will be a reminder of the resources that are out there to encourage people while living with illness.”

To find out more about Rest Ministries visit our web site at www.restministries.org and information for National Invisible Chronic Illness Awareness Week is now being updated for 2009 at www.invisibleillnessweek.com

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Articles to Read

Whether you are looking for someone who cares and understands invisible illness or you simply want to read more about this topic, some wonderful articles are available for your reading.

Since some of these articles have been made available for us through the gift of others, we ask that you please read the footer at the end of each article regarding reprint/copyright information.

Do you have an article you’d like us to consider posting? Please email it to us with your bio and reprint considerations.

Coping with an Invisible Condition

What makes an illness or condition visible or invisible? Assistive devices, body appearance, and behavior tell others you are ill or disabled. Devices include canes, wheelchairs, walkers, crutches, braces. Most of these are used for mobility. Body appearance can be things like . . . by Dr. Brian Grady

50 Ways to Encourage a Chronically Ill Friend

Want to help but don’t know where to start? We all have those times we don’t have a clue what to say or what to do (like bring another casserole- gasp!) These are 50 ways reprinted from Beyond Casseroles: 505 Ways to Encourage a Chronically Ill Friend. . .by Lisa Copen

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… by Lisa Copen

But They LOOK So Good!

Surprisingly, more than 125 million Americans have at least one chronic condition. Nearly half have more than one. An illness or injury is considered chronic, when it lasts a year or longer, limits activity and may require ongoing care… by Sherri Connell

Why Seeing is Not Always Believing
Has someone ever said to you, “You look great!” while inside you felt fatigued or were in profound pain? People who live with ongoing pain and chronic health challenges face such dilemmas every day. Since many ongoing symptoms often do not manifest outwardly, people sometimes have a difficult. . .By Carol Sveilich, MA. author of Just Fine: Unmasking Concealed Chronic Illness And Pain

Reinvent Your Dreams
Often when we are sidelined with pain and illness, we stop dreaming – about who we want to become, what we want to do, things we want to experience, how we want to impact the world. This often leads to a profound sense of loss, fear, frustration, and sometimes depression. We can become trapped and immobilized by not only our physical pain, but our emotional distress as well. By Joanna Wasmuth, founder of Harmony Coaching Group

6 Ways to Let Those with Chronically
Illness in Your Church Know You Care

Nearly 1 in 2 people in the U.S. have a chronic condition. If it’s not you, it’s someone sitting next to you. Too often, a chronic illness, such as fibromyalgia, or a chronic condition like back pain from a car accident, is invisible. Those who live with chronic illnesses do everything they can to look presentable, get to church, and sit through the service. But as someone with rheumatoid arthritis, as I stood during worship. . . By Lisa Copen

How Does Social Security Define “Disability” Anyway?

Have you ever wondered what the “definition” of disability is? I know you have…we all believe we know “who” is disabled and “who” is not. Heck, you can tell just by looking at a person! Doctors are usually certain they know whether their patients meet the “definition” of disabled… by Scott Davis, Esq.

When a Friend Has a Chronic Illness: What to Say How to Help

When a friend is diagnosed with a chronic illness the natural cycle of healing doesn’t take place. What do we say? Do we encourage her to remain hopeful? Chronic illness is permanent and often degenerative, requiring her to change nearly everything about her life. The emotions that accompany these changes in her life are often more difficult to cope with than the pain itself… by Lisa Copen

How Do I Make People Understand?

“I don’t understand why you won’t at least take his phone number; he’s a Christian and he specializes in herbal remedies. He could heal you and then you could share his success with everyone and that could be your ministry…” by Lisa Copen

When Friends Just Don’t Understand

As I hang up the phone from a talk with a friend who I hadn’t spoken with in months, I smile at the sense of renewal I feel. Nothing can replace a good laugh with someone who knows you well and loves you anyway. Friendships are one of the greatest… by Lisa Copen

One Woman Shares Her Story
“I cannot tell you how many times I have heard the phrase ‘But you Look So Good!!’ or ‘you look good, so you must not be in pain. . .”

Seeing Invisible Disabilities
Jesus had a way of seeing what others missed and ministering to those who were forgotten, shunned, or misunderstood. He touched and healed lepers when everyone else scurried away. He cared for those with chronic afflictions — such as congenital blindness and incurable hemorrhage — while others gave up. He bestowed hope where others scattered the ashes of despair… by Dr. Groothuis.

When You’re Spouse Doesn’t Believe that You are Ill

The doctor couldn’t find anything wrong with her, despite her complaints about pain and extreme fatigue. He left the room and her husband came back a few minutes later. “Hi, Honey,” she replied to her spouse, as she carefully reached out for his hand. But he didn’t reach out to take her outstretched hand; he just let it sit there empty on the scratchy hospital blanket. He looked at her with tired eyes, full of frustration… by Lisa Copen

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Winning Your Disability Case in Three Words…
Frequency, Severity and Duration

In a disability case, almost any symptom or limitation can be disabling; but to determine whether they preclude work, the relevant questions are how frequent, how severe, and how long do they last?…by Scott Davis, Esq.

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When Friends Turn Away

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…

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Making Desirable Changes

Health problems and symptoms, with the possible exception of pure genetic disorders, carry a signal to change. Even the flu tells us to rest and take Vitamin C. The message can be as obvious as, “get better shoes,” if our feet hurt, or it may be hard to decipher. It can relate to an internal issue, like a headache that means, “Stop trying to be the perfect mother, already!” Or it could be telling us about an external change…By David Spero, RN

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No Cast, No Cane, No Pain

Have you ever seen someone get out of a car parked in a space reserved for the disabled, who did not LOOK disabled? Did it make you very uncomfortable or… by Sherri Connell

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I Never Know What to Say or Do!

Have you ever wanted to encourage someone with a chronic illness, but it seems like you never know what to say? Moreover, when you finally think of something you just know will make them smile, do they snap back at you with frustration? Well, you are not… by Sherri Connell

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GUEST BLOGGER: Can You be Friends If They Think You Are Faking Your Illness?

by Lisa Copen
[This article can be reprinted "as is" for your own web site, blog or personal use]

Are you interested in being a guest blogger? We are having guest bloggers through Sept 14th, 2008! Send us your submission to be a guest blogger for National Invisible Chronic Illness Awareness Week.

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Can You be Friends If They Think
You Are Faking Your Illness?

If you live with an invisible illness, you may find the emotions of coping with people’s doubts about it can be harder to manage than the disease itself. Most of us with a chronic illness must eventually accept our condition. In order to live our best life, we need to educate ourselves about the disease and make well-researched decisions about treatment.

But we have no control over our loved ones when they choose not to accept our illness, or sometimes even acknowledge it. Their skepticism can last a lifetime and damage our self-worth and many relationships.

So, what you do when someone important in your life refuses to acknowledge the seriousness of your disease, or accept that the disease even exists? Here are four steps to change your actions and attitudes:

1. Go with it. Your life feels very serious right now, but don’t take your situation too seriously when around your friend. Unfortunately there is not a magical talk you can have that will make him instantly change his mind about your health situation. Most likely, the only way for him to rethink his perception of your illness is for him to observe you and your typical activities. Though your illness may be invisible, he may start to witness some visible symptoms. Perhaps you may have some new limitations, like being unable to walk a long distance; and rather than explaining what you can and cannot do, he might just see it.

2. Grow with it. Use this as an opportunity to reflect on how you perceive other people and what you assume about their abilities. For example, when you’re standing in line at the store and feeling wiped out, it is easy to assume “No one else knows how hard this is for me!” Surprisingly, nearly 1 in two people live with an illness and about 96% of the painful diseases are invisible. So the odds are that there are people who do actually understand how you feel. Also, think about what situations your friends are experiencing that you don’t really understand. Is a friend suffering from a spouse who has had an affair? Do they have a parent who has Alzheimer’s? Or have they recently lost a job? All of these events dramatically change one’s life and your friends can use your empathy and understanding.

3. Get over it. It is easy to obsess over the fact that no one understands what your daily chronic pain is like. Save yourself a lot of grief and don’t do it. We would all like a loved one to be able to slip inside are skin for twenty-four hours, but this level of understanding of our disease will never occur. If you began to resent people who don’t understand, soon all your friendships will be tainted. Do not take a friend’s lack of empathy personally, even though it feels personal. You cannot change someone’s mind; you can only control your own behavior, so make certain you have conversations that you won’t regret.

4. Get on with it. No material things in this world can replace relationships you have. If a loved one doesn’t acknowledge your illness, it’s true that the depth of your friendship will never be what it could be. But if the relationship is healthy in other ways, and one worth saving, you can keep it.

The odds are that in time your friend will eventually have his own health crisis, and have some level of understanding about what you have faced on a daily basis. He may even turn to you for advice. Be supportive and encouraging. Don’t say “I told you so.”

Go with it. Grow with it. Get over it. Get on with it.

Is it possible to have relationships with people who don’t understand the seriousness of your illness? Yes. Accept him for what he is able to give, and know when to back off if the relationship becomes destructive to your emotional state. Have reasonable expectations. In time, this may end up being one of your closest friendships.

I believe National Invisible Chronic Illness Awarness Week is important because… it gives us a chance to bring people who live with thousands of different illness together and discover we have more in common than not. We can encourage one another while also creating a deeper understanding among the “healthy” population that most illness is invisible and that many of their preconceptions about people with chronically ill aren’t always correct.

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Lisa Copen is the founder of National Invisible Chronic Illness Awareness Week, Rest Ministries and the author of various books on chronic illness. Get a free list of 200 Ways to Encourage a Chronically Ill Friend from “Beyond Casseroles” by Lisa Copen, just sign up for HopeNotes invisible illness ezine at Rest Ministries.

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