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March 21, 2014

Living with Chronic Illness

Reuel S. Amdur

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Most of us, especially if we live to old age, will find ourselves suffering from one or more chronic conditions. In most of these, it is up to us to decide how we cope. Not deciding is also a decision, but one that makes us an object, not a subject, not a participant in our own care.

Chronic illness typically begins gradually, in many cases without a clear cause.  Sometimes a diagnosis is uncertain.  We are considering conditions that are typically lifelong.

Among causes are smoking, lack of exercise, poor diet, stress, thyroid hormone insufficiency, and changes in brain chemistry.  Causes may be known or unknown.  Symptoms of a disease may proliferate and boomerang in a vicious cycle.  Here is an example, considering chronic pain.

Pain creates physical limitations and poor sleep.  These may lead to fatigue which may cause depression, leading to increased awareness of pain, and so on again.

Do we want disease to control our life, or do we want to control the disease?  We can take hold and manage our symptoms, and what we think about the situation has a real impact on the effects of the disease.  The mind and body interact.

If you want to be more than a passive victim, the first step is to learn as much as you can about your condition.  Next, it is essential to communicate fully with your physician or other health care provider.  Report unusual or severe symptoms, also any new symptoms or lack of progress after beginning a new treatment.  Sometimes effects of treatment may take time, something to discuss with the doctor.

In coping, while following the prescribed steps for treating the condition it is important to continue life as normally as possible, all the while avoiding negative emotions.  You may need to slow down, for example after a heart attack, but slowing down is not the same as doing nothing.  Incidentally, some people have said that sexual activity after a heart attack is dangerous.  Don’t believe it.  

A person with a chronic condition should plan what he wants to accomplish.  The plan needs to identify ways of achieving the goals.  When you set about meeting the goals, the next step is to evaluate results of your efforts.  If things do not work out as planned, make changes and try again.  If you attain a goal, celebrate the success.  In taking charge, you are making the best of living with uncertainty.

There are self-help groups for many conditions.  Where you are unable to find one for your problem, you may be able to find an appropriate discussion group on the web.  Being alone with your problem is not the answer.  And when you need help, tell people what you need.  “Would you help me get up out of this chair?”  “Remind me of this appointment.”  “While you are at the store could you pick up a few things for me?”

If you notice that symptoms occur with certain activities, try to change what you are doing, but do not become inactive.  Take the case of pain.  If a person becomes inactive because of pain, he loses conditioning, and lack of conditioning can lead to more pain.  On the other hand, overdoing it can also lead to increased pain.  The answer is the happy medium, neither excessive activity nor being overprotective.  There are physical and psychological ways of dealing with pain.  Physically, there are medications, ice, heat, and massage.  Mental approaches include relaxation and use of distractions, even just television.  So let’s briefly discuss some other symptoms.

To counteract depression, counseling, medication, and self-help groups are standard treatments.  Also, a depressed person should plan to do something enjoyable from time to time.  And avoid alcohol and recreational drugs.  Exercise.  Socialize.  Find ways of helping others.  Problems of stress can be addressed in the same ways.

Turning to sleep, there are ways of counteracting insomnia.  A vaporizer in the bedroom provides greater comfort.  Before bedtime, avoid eating, alcohol, caffeine, and smoking.  The glare from television and computer screens can make it more difficult to fall asleep.

Itching encourages scratching, but that only makes the matter worse.  Use a cream, with or without an antihistamine and a humidifier.

Losing weight is extremely difficult.  Quick methods fail.  In extreme cases, surgery can be at least a partial solution.  Weight loss requires a lifelong commitment.  An effective weight loss program includes healthy eating, support group meetings, and follow-up.  The Weight Watchers program has been found to be reasonably effective.  However, do not expect huge losses from non-surgical approaches.  A rule of thumb is that a ten per cent loss may be attainable.

In chronic disease, let your physician know all the medications you take, including natural remedies and over-the-counter medicine, as well as any recreational drugs.  Tell him any reactions you have to them.  The doctor needs to work with you to get the dosage of medications right.  He and the pharmacist should advise you of any problems in taking alcohol, recreational drugs, or natural remedies with the medicines prescribed.  Even grapefruit is contraindicated with some medication. 

Before you see a physician or other health professional, you may want to write out the things you want to cover, to be certain not to forget anything.  If the doctor does not have time to cover the list, give him the list and make a follow-up appointment.

Many health departments have public education programs based on a Stanford University program called “Living a Healthy Life with Chronic Conditions”.  You can check with your local department to see if they have one in your area.

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