Article Index

Taking charge

Another important point to make, and emphasize, is this: Do not accept emotional abuse or, dismissive behavior from doctors. Doctors have a responsibility to treat us with common decency and not threaten us or patronize us.

They do not have to have all the answers or even understand this illness, but they need to treat us as humans. It is not acceptable for them to stress us out, either, but it happens all the time.

Speak up when appropriate. Not every doctor is a good doctor (but assuming you find one, know when to ask for help).

As a new patient, be patient.  It is always frustrating because we want the answers not today, but yesterday. Slow down a little. If you can't, the illness will make you do it anyway.

Ask to be treated symptomatically to reduce the pain, to help with the sleep disturbance, to handle dizziness and balance problems, to rein in the headaches, to control allergies, etc. Once you get a bit of relief, then you'll be in a better position to start using your energy to read and learn.

Try not to let the initial stage of confusion and fear pull you down. Instead, as you add knowledge and connections with other patients, imagine yourself standing in the center of a circle. All the information you need is on the outside edges. As you pull the pieces from the edge toward you, you are in charge and getting continuously more knowledgeable.

Being forced to adopt major life-altering behavior as a result of a chronic illness creates enough trauma. Recognize this and it will make it easier.

Lying in bed thinking of all the things you could do if you could just get up will only stress you out more. It may take a while to learn new behaviors and attitudes. Many patients come from a background of being independent "over­achievers" used to getting things done.

Adapting is difficult—but necessary.

To better days!