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Living with Invisible Illness: 5 Ways to Get Over Aggravations

by Lisa Copen  
5/26/2008 / Health

"You look great today. You must be feeling a whole lot better?"

"You haven't really experienced chronic fatigue until you've had twins and worked full-time!"

"I think it you sit around thinking about your pain too much. Just get out of that house more and it may just heal itself."

"If you really wanted to get well, you'd get serious about taking that juice I recommended. I don't understand why you won't at least try it."

And the remarks go on. . . and on.

And it really hurts.

You may be surprised to hear that nearly 1 in 2 Americans has a chronic illness or physical condition that impacts their daily life. The range of diseases and included everything from migraines to diabetes, back pain to fibromyalgia, and arthritis to cancer. One of the largest emotional obstacles for people who suffer from illness is coping with the invisibility of the pain and feeling like no one understands what they deal with on a daily basis. And they are justified in these feelings, as about 96% of illness is invisible, meaning the person who suffers from the chronic condition show no outward signs of physical pain or disability. An assistive device is not needed like a walker or wheelchair. But the incredible pain one experiences each day can be disabling within the confines of the home.

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

[1] Free people from the expectations you typically have had of them. This step will likely be a life-long process, but without taking it, you will consistently find that people will always disappoint you. No one is perfect-even you! And it's important to remember that those with illness do not understand the difficulties that our friends are going through, such as a divorce, the death of a loved one, an ill child, a loss job, etc. Your illness is momentous in your life. And even though people do care, they still will have significant things going on in their own lives. Don't hold that against them.

[2] Find supportive friends. If there is someone who is constantly belittling you or doubting your illness and he is beyond listening, let go of that friendship or distant yourself from that relative. Illness has a way of helping prioritize friendships and 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 have a personal interest in. Don't allow yourself to feel like the skills you learned in a workplace are no longer valuable. Maybe you've always wanted to write children's books or be a business consultant. Plug in and do some volunteer or part-time work to continue to grow professionally and use your skills for project you feel passionate about. Rather than focusing on what others aren't doing to comfort you, follow your dreams and give that gift 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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