What is a Chronic Illness Exactly?

By Lisa Copen

What is a chronic illness?

The definition of a chronic illness is rather broad. Examples of chronic illness include: diabetes, heart disease, fibromyalgia, arthritis, lupus, and even cancer. If it affects you for more than a few months, it’s often considered chronic. Despite the fact that the majority of theUS population looks rather healthy, statistics show that nearly 1 in 2 people have a chronic condition. This could be an illness like cancer or rheumatoid arthritis, or a condition such as arthritis, migraines or back pain from a car accident.

What is an invisible illness and why do you talk about it?

According to the 2002 US Census Bureau 96% of illness is invisible. This means that these people do no use a cane or any assistive device and may look perfectly healthy. As the founder of National Invisible Chronic Illness Awareness Week held annually in September, I believe it’s important to remind people that many of those who live with illness look perfectly healthy and yet may be in deep pain. It’s a time to educate those who do not live with illness about how to encourage a chronically ill friend; it’s a time to bring those with illness together and allow them to feel validated that their pain really exists; and it’s a time to increase communication and understanding between those with illness and those who care about them.

Isn’t there a cure?

We have grown up in a society where we believe taking a certain medication will immediately give us our “old life” back. The truth is, there is a new scrutiny of age old problems and chronic illness. What you see in the commercials on television are rarely the reality. However, you are also the one who cares the most about your body and your life. Trying alternative treatments such as particular diets, acupuncture, herbal supplements, etc. can be an option. And if you are suffering from depression, don't discount it. Mental depression is a chronic illness that affects every area of you and your family's life too. Be cautious and talk with your doctor about it and treatment. Certain treatments may hinder or even conflict with medications you may be taking.

I’ve just been diagnosed with (__ fill in the blank __.) Now what?

• First, go ahead and have a good cry. Being diagnosed with something you may live with the rest of your life can be emotionally exhausting. Give yourself an hour, or even 3 or 4 days to get it all out. Then it’s time to start getting practical.
  
• Do a bit of research on the internet about your illness, but not too much. Your best option is to contact the nearest branch of whatever medical organization serves your illness and tell them you’ve just been diagnosed. They can send you helpful information on everything from doctor recommendations, therapies, medications, and emotional needs.
  
• Get off the internet. Don’t spend hours reading everything you can find. It will be depressing and some of the information will be wrong. Other information may apply thirty years from now, or not ever, so don’t allow yourself to think the worst is just weeks away.
  
• Determine if you current doctor that helped diagnose you will be a helpful part of your medical team. And yes, you will likely have “a team” of doctors in time. If you don’t believe your current doctor will be exceptional in serving your new needs, start asking around for recommendations. I’ve found doctors of internal medicine a good fit as my “general practitioner.” Also, immediately make an appointment with a specialist. Specialists can take up to six months to see for your first appointment, so even if you just think you may have fibromyalgia and your general practitioner says, “Let’s just wait it out a bit and see what happens to your pain level,” make an appointment now with a rheumatologist.. Don’t burn any bridges, but don’t be passive about your medical needs.
  
• Decide who to share information about your illness with and how much. It’s your choice, but also recognize that people will tell others. Decide who will be your best support through this first phase of your illness. And be aware that everyone you tell (or who hears through another means) will likely have some amazing advice that they believe they are responsible to give to you. You will learn to cope with this in time, but be prepared for the can of worms you are opening.
  
• Examine your job options. Can you keep working? For how long? Should you tell your boss or not? An excellent web site is www.keepworkinggirlfriend.com which has an extensive amount of information about your rights and your “wants” when it comes to your career and its impact by illness.
  
• Find an online group for some personal sharing and venting. Social isolation in chronic illness is very common but chronic illness and resiliency can go hand in hand. You will have days you really need to talk to someone who just “gets it.” An online support group is immediately available and has few strings attached.
  

Where do I find hope?

Hope comes in many forms for different people. For some, they are able to find hope by waiting around for the next new medication to be approved by the FDA. Others search for hope by becoming so well-educated on their illness that the obsession can take over the rest of their life. Since I am a Christian, I have to say that the place I find hope is in my faith. My favorite verse is Psalm 119:50: “My comfort in my suffering is this: Your promise preserves my life.”

I began Rest Ministries in 1997 because I saw a lot of people like myself who were searching for the reason why God would allow illness into our lives. Even if you do not believe in God you may find yourself shaking your fist at the ceiling and saying, “Why are you doing this to me?” You may find it interesting to know that studies have also proven that the significance of one's faith has shown to lower one's risk of depressive symptoms and aid one in better handling a stressful medical event.

I am able to find hope knowing that their truly is a purpose in the pain. I am blessed to have found it, as I am able to encourage thousands of others on their journey of living with a chronic illness. Whatever you believe, you will have to find the place that gives you true hope and peace, and the odds are it will not come in a bottle or through a simple treatment.

Why can’t anyone understand what I am going through?

People just won’t get it—even those that love you the most. I wrote a book “Why Can’t I Make People Understand?” (www.comfortzonebooks.com) about this very topic and the emotional and spiritual struggles one deals with when it comes to their relationships to other people and its impact by illness. Have reasonable expectations. Communicate calmly and clearly. Discuss it with those who have an illness to better understand what is reasonable and what is not when it comes to others and their level of understanding.

Will I ever get better?

Maybe. Even the doctors don’t know. Some people have an “episode” and then go into remission for years. Others live with pain ever day. Be a good advocate for your health but don’t put a hold on living while you wait to get well. By maintaining a job, hobbies and/or relationships, even if they are different than what you had before illness, you will be in a healthier state of mind and your body’s immune system will benefit.

(See http://www.restministries.org/invisibleillness/statistics.htm for sources of studies and statistics quoted.)

-------------------------------------------------------------------------------------------------------------
Get a free download of 200 ways to reach out to someone who is hurting from Beyond Caseroles: 505 Ways to Encourage a Chronically Ill Friend when you sign up for HopeNotes, a monthly ezine. Author of this article, Lisa Copen is also the founder of Rest Ministries and National Invisible Illness Awareness Week.