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5 Ways to Surrender Frustrations of Living with Invisible Illness

by Lisa Copen  
3/18/2008 / Health

"But you look fine. Are you sure you're as feeling as bad as you say?" "You haven't really experienced chronic fatigue until you've tried to raise three children on your own!" "I think it you just got out of the house more and didn't think about it so much, it may just heal itself." "If you were serious about trying to get well, you'd at least try those vitamins I recommended. It never hurts to try."

And the remarks go on. . . and on.

And it really hurts.

Nearly 1 in 2 Americans has a chronic illness or physical condition that impacts their daily life. This can include everything from arthritis to cancer, migraines to diabetes, and back pain to fibromyalgia. One of the biggest emotional hurdles for people who suffer from illness is the invisibility of it. About 96% of illness is invisible; meaning the person who suffers from the chronic condition may appear to be a healthy individual, but who actually suffers each day from physical pain. One may never guess the intensity of the pain suffered within the confines of one's home, as she of he shows no outward signs of physical pain or disability, nor does he or she use an assistive device like a walker or wheelchair

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

[1] Release people from the expectations you have of them. This will likely be a life-long process, but without taking this step, you will consistently find that people will always disappoint you. No one is perfect, even you! And it's vital to remember that those with illness do not understand the difficulties that our 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 incredibly significant in your life. And even though people do care, they still will have significant things going on in their own lives. Don't expect them to always be at your call.

[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 blessings in your life. Make a commitment to stop dwelling on how badly you feel, and instead search for ways to bring more joy into your life, even if it's just appreciating the small things. What are you doing when you feel natural adrenaline kick in and give you extra energy? Most likely, that's where your passions are! Bring more of these into your life. And don't let your limitations stop you. For example, if 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. If you want to aim high, consider starting a garden consulting business.

[4] Use your aptitude and talent for things you have a personal interest in. Too often we feel like the skills we learned in the workplace are no longer valuable. Perhaps you've always wanted to write children's books or be a business consultant. Get involved in your community and do some volunteer or part-time work to continue to grow professionally. Rather than focusing on what others aren't doing to comfort you, follow your dreams and give that gift of comfort to yourself.

[5] Be a mentor for someone else with an illness. You know how hard it is to live with illness and to feel like no one understands what you are experiencing, 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 else's journey simpler. You'll find your own journey is more enjoyable too. For example, if you are 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.

We can't change other people-but we can educate them and give gentle advice about how many people live with invisible illness. Then we much work on ourselves. You'll find that even when you want to change it can be difficult. It requires discipline and motivation for a better life. You owe it to yourself and finding joy in your life despite invisible chronic pain will improve both your mental and physical health.

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

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