Looking good when you feel terrible could be seen as a blessing. When you live with chronic illness, however, it can also cause a lot of resentment and misunderstandings.
"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 comments go on. . . and on.
And it hurts.
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 ways to forgo 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. 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] Find joy in your blessings. Rather than thinking about how badly you feel, find ways to bring more joy into your life. Appreciate the little things. Observe what you are doing when you have a burst of unexplained energy and realize that there lies your passion. Focus on bringing more of this into your life. You may not be able to garden like you once did, but you can grow a few potted flowers or hire a neighborhood teenager to plant some vegetables and set up an automatic sprinkler system for them. Or if you want to dream big, start a consulting business for want-to-be gardeners.
[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] 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 else's 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.
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