Chronic illness turns your life upside-down. It spins your whole world. One day you're living your life just like everyone else and then all the sudden without your permission your body doesn't work the way it's supposed too. Everyday things such as grocery shopping, visiting friends, going to church, things most people take for granted are huge obstacles for you to climb everyday. Even getting out of bed or dressing or getting in and out of a car have become hard for you. Healthy folks don't realize the amount of energy used for those tasks. They are things we all take for granted until we become ill.

Chronic illness of any kind is a scary journey. No-one wants to be dependent on others. And I might add it is also very lonely. Come with me for a moment into the land of imagination. Imagine no-one in YOUR world has heard of influenza. Imagine though you look well you really have influenza and you feel miserable. But since no-one in your world has heard of influenza, they don't understand you when you tell them how awful you feel. Just how lonely do you think that would be? And think of the desperation you would feel knowing there was no cure for this ill feeling which no-one understood. You don't want to imagine this do you? But people with Lupus (and/or other auto-immune illnesses) live this battle everyday of their lives. And the struggle is compounded by the difficulty of diagnosis, side effects of medications and medical bureaucracy. HMO's cause much suffering....but that's another topic so I will leave it for now.

In my journey I have found it's really important to be well-informed about your chronic illness. Educating yourself about your illness helps you to ask your doctor better questions. It also helps you to better inform your spouse, relatives and friends. And most importantly education will help you to understand your options and make decisions. In my opinion, one should never blindly allow a doctor to make all the decisions for you. This is your life. Who is going to handle YOUR life with more care other than you? So ask questions of your doctor. Be involved in your care. You may have a disease ravaging your life. But YOU still have options. So learn all you can about the disease and it's treatment. You must know thy enemy in order to live with and/or defeat it.

Do you need to change your lifestyle? Have you been cheating yourself out of nutrition? Very often nutrition is sacrificed for convenience. So STOP THAT!!!!!...Quit eating prepared foods. Eat lots of fresh vegies and fruit. Go easy on the red meat. Add soy foods to your diet. Ask your doctor to recommend a dietician or nutritionist. Healthy food can be fun!!!! And I might add it is one of the most important tools you have in fighting your illness. So don't squander it.

Another very important tool which you already possess is ATTITUDE. Your attitude is going to determine a lot about the course of your disease. I can sum it up in four words, "Happiness is a choice." Speaking for myself, I find that my illness has given me as much as it's taken from me. It has made me a more compassionate person. It has shown me the real beauty in nature. When I look at a rose or a flower or a desert or a mountain I see a beauty I did not see before I became ill. If you are a healthy person reading this I hope you take to heart my last few sentences and slow down and (forgive the cliche) smell the roses. Take the time to see the beauty in the world.

At some point in our journey with an auto-immune illness we all struggle with the lack of understanding about our illness. We all tell folks we're ok to spare them the details we know they wouldn't understand. We all run into that person who has the magic herb to make us ok again. We all run into people who tell us how healthy we look and who discount our illness because of it. You must reach a point where you understand that no amount of explanation to these people will make them understand. AND then stop beating your head against a wall. These frustrations are why we need to fashion for ourselves a support system of folks who really DO understand. There are many ways to do this. Join a support group. Many local hospitals have support groups for various needs. If there are no support groups near you then start one!!!! Find a message board on the web for folks with your disorder. Call the national organization for your disorder. Ask them for information. Educate yourself.Another very important tool which you already possess is ATTITUDE. Your attitude is going to determine a lot about the course of your disease. I can sum it up easily, "With or without a disability, I am whole and happiness is a choice I make".

SUPPORT LINKS:

Lupus Foundation of America

Living with Chronic Illness

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