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Only the Internet . . .© Kerrin Leon White
Only the Internet offers to patients afflicted with of wide range of numerous diseases . . .
(1) The opportunity to interact with large numbers of others similarly afflicted around the country and even the world; (2) Availability of experts on your condition to answer your individual questions about an illness and its treatment--most often, for free; (3) Breaking news of developments in research and services specific to your own condition; (4) Education as needed in the basic facts and ideas important to understanding your illness; (5) Easy access to many professional medical journals and research reports.
In this article, I'll consider these unique advantages of the Internet for people with innumerable conditions, but often I will use for my examples the area with which I am must familiar: sleep disorders.
Making Contact with Others Who Share Your Illness
Without the Internet, how would you go about learning from other patients with your problem? One opportunity exists in the waiting room, especially that of a doctor or clinic specializing in one disease or group of diseases. For example, over the past 9 years I have spent a lot of time waiting to see sleep specialists; obviously, many other people with sleep apnea shared the waiting room with me. Oddly enough, I scarcely ever spoke with them! I suppose that apnea as a disease only recently appreciated may have yet to gain wide acceptance, and people so afflicted may still feel reticent about sharing their experience with strangers. For all I know, the social atmosphere of a diabetic clinic may differ markedly; you have to ask this question of yourself: how much do waiting rooms serve to provide you with face-to-face exchanges of information? Another opportunity may exist in support groups organized around dealing with a specific disease, like breast cancer. If you have this sort of resource readily available to you, you're in luck; if you don't, you have a lot of company! No medical center can provide support groups for every people with each and every illness--not even all the common ones. There are also organization that sponsor support groups: for example, the AWAKE groups organized by the American Sleep Apnea Association. If you have an active group nearby, you have a good resource. However, in my tiny state of Rhode Island, I know of only one such group, that meets about once every few months. What can the Internet offer that these resources don't? For one thing, free from the constraints of geography, the Internet provides access to a vastly expanded population of people with any given ailment. For example, if you have sleep apnea or the rarer condition of narcolepsy, you will find a number of sleep sites which offer chats, such as TalkAboutSleep at http://www.talkaboutsleep.com. You will also find at many such sites bulletin boards where you can post notices about problems or questions you have, and get feedback from many people, some with the same illness, some with clinical experience diagnosing and treating that illness. These are widely available, one example being the site called ApneaNet at http://www.apneanet.org. One immense, possibly confusing, but often informative bulletin board is provided by the newsgroup called "alt.sleepdisorders." |
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