Living with Chronic Illness
by Elizabeth Holtzman

Chronic illness does not match the common pattern of how illness unfolds. You get sick, go to the doctor and get some medicine and wait to get better. If there is no cure for what ails you, you die. Chronic illness is a sign of the advances in medicine. Advances in diagnosis and treatment have slowed the course and impact of diseases previously considered terminal. They have become diseases not to "die of" but to "live with."

Diseases such as diabetes, cardiovascular disease, lupus, multiple sclerosis, hepatitis C and asthma are some of the more familiar chronic illnesses. More recent additions are chronic fatigue syndrome, immune dysfunction disorder, fibromyalgia , AIDS and some specific cancers.

The course of a chronic illness often begins with an individual experiencing symptoms, which are often diffuse and which come and go. By the time a person decides to consult a doctor they go in expecting to receive a diagnosis and a treatment plan. When the diagnosis is difficult, which is often the case, a search ensues through a variety of specialists. Knowing where to go and which specialist to consult can take on a life of its own. When a diagnosis is not readily forthcoming, an individual may become increasingly frustrated and start to question whether it is "all in my head."

When a diagnosis is finally obtained it can be a tremendous relief, despite a frightening diagnosis, just to know what the illness is and that "I'm not going crazy." Any pleasure, however, is short lived and is certainly not a universal reaction to diagnosis. Many people are overcome with sadness at having their worse fears confirmed. Others may experience shock or detachment. The emotions elicited by chronic illness resemble those described by Elisabeth Kubler Ross as stages of grief. In fact, the person is grieving over their lost health and all the ramifications of that loss. With chronic illnesses, however, that go on and on, one cannot count on a linear emotional progression when one's physical condition varies erratically

The first step in accommodating oneself to chronic illness is negotiating a coexistence with this "sinister force" that allows one some autonomy. The question becomes "Who am I now that I am sick?" People whose illnesses involve visible handicaps have their new identities thrust upon them. Those who have no visible signs of illness have more options. They may choose to try and keep their illnesses secret and their original identities intact.

As if private anguish, grief and unwelcome changes aren't enough to face, a diagnosis of chronic illness throws one up against a whole new set of social expectations. "How do people expect me to behave now that I am sick? Will they treat me differently? Will they think less of me? Do I have to overcome the illness to prove myself? If I give in to it am I giving up? What does it mean to be unhealthy in a health-conscious culture?" Chronic illness, by demanding that you focus on your body, will almost certainly affect both your self -image and public persona.

Chronic illness will impact relationships at home with partners and children. It will impact how one functions at work and relationships with colleagues. The way in which the illness will impact these areas will be affected by the state of the "coexistence" a person has formed with the illness and the new identity developed. An individual makes a choice whether to fight the illness to the death or to accept it as their normal state of being. It is a choice that will be made over and over again with each change in physical condition. There is a spectrum between the two choices of perfectly healthy to hopelessly ill. For example: ( taken from The Chronic Illness Experience by Cheri Register)

- You can tough it out, ignoring symptoms at the risk of getting worse, or you can trust one doctor's judgment at the risk of selecting unwisely.
- You can keep your ailment secret at he risk of deception, or you can talk openly about it, at the risk of self-pity. 
- You can ask friends for help, at the risk of becoming a burden, or you can hold fast to your independence, at the risk of isolation. 
- You can strain your body to its limit, at the risk of harming yourself, or you can play it safe, at the risk of becoming an invalid.. 
- You can be angry about your fate, at the risk of bitterness, or you can focus only on your blessings, at the risk of self-delusion.

No one can say with absolute certainty which of these extremes is the healthier or exactly where the healthy medium lies. Only trial and error will determine the most livable choice. These choices are seldom made once and for all. An individual's health condition may change for better or worse and require different choices. People who choose to pass as healthy may fear loss of independence and self-esteem as much as they fear physical degeneration. When their bodies go out of control, however, they then want acknowledgement and sympathy from family friends, coworkers, and doctors.
Peer support is something the chronically ill describe as particularly helpful but it is sometimes difficult to find depending on how prevalent one's particular condition may be. It is easier to find a support group for diabetes than for inclusion body myositis or reflex sympathetic dystrophy.

Living with chronic illness is a search for quality of life. One needs to be well informed about their illness in order to manage their physical symptoms as best one can. However, one also needs to learn to live with a certain amount of ambiguity and uncertainty. Striving for a balance between work and play, rest and activity, relationships and solitude, and grief and joy, the challenge to the chronically ill is to come to accept one's limitations and appreciate one's gifts.