Five Tools to Cope with Invisible Illness
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 one in two Americans has a chronic illness or physical condition that affects their daily life.* The range of diseases include 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 percent of illness is invisible. This means that the person who suffers from the chronic condition shows 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 five tools to help let go of some of the frustrations:
1. Let go of expectations.
Surrendering over expectations of others may be a life-long process, but if you have high expectations you will consistently find that people will always disappoint you. No one is perfect, including you! Remember that you may not 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. When they don’t meet your expectations it is rarely intentional.
2. Find supportive friends.
Is there someone in your circle of friendship who is constantly belittling you or suspicious about your illness? Is he 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. If it is someone like a relative that you will still see occasionally, distance yourself as much as possible. Illness can help us easily prioritize our friendships; 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 your natural adrenaline seems to take over some of the fatigue, 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. Think beyond what you once did, but find ways to replicate the things you love in new ways.
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 else’s journey easier. You will find your own journey more enjoyable too.
None of us can change another person or make someone care, but we can educate 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.
* “Chronic Care in America: A 21st Century Challenge,” a study of the Robert Wood Johnson Foundation & Partnership for Solutions: Johns Hopkins University.
Lisa Copen is the founder of Rest Ministries for the chronically ill and National Invisible Chronic illness Awareness Week, held annually each September. She is the author of Why Can’t I Make People Understand? Discovering the Validation Those With Chronic Illness Seek and Why. She has lived with rheumatoid arthritis and fibromyalgia since her early twenties, 18 years now. Visit the Rest Ministries website.