(as published in the Syracuse Post Standard
July 19, 2011)
When you must cope with a medical problem or manage a chronic illness, you’ll find you have a variety of challenges and questions.
For clinical, medical questions, your most trusted resource should be your doctor.
But when it comes to everyday management of your illness or condition, then you may be able to learn much more from other patients with your same diagnosis.
The answers and resources provided by other patients or their caregivers can be invaluable. Have they ever experienced similar side effects to drugs? How do they cope with pain? Who is a good doctor for a second opinion? Have they found any effective complementary or alternative therapies? These aren’t medical questions – they are experience questions.
Where can you find patients with your same diagnosis? Support groups.
There are support and affinity groups for every diagnosis or set of symptoms you can imagine. From Alzheimer’s to hypertension, from Lyme Disease to depression – patients and caregivers are sharing information with other patients every day.
Some support groups are local. They may be sponsored by local hospitals, large physician practice groups or by associations that represent specific medical conditions or problems. Ask the nurse in your doctor’s office for information about these groups and find one that meets at a convenient time and place.
There are also thousands of Internet support groups. Many independent health and medical websites provide forums for individual diseases or conditions. Some of the same organizations that sponsor local support groups provide online versions, too. Link here to find listings and additional information about these groups.
If you decide to participate with an online support group, you’ll want to do so safely. Remember, that even if they claim to be, other participants are probably not medical professionals. Be sure to verify with your doctor any medical information provided.
Conversely, don’t try to give medical advice to others. You aren’t a medical professional either!
Finally, take steps to protect your privacy. Stay as anonymous as possible. Don’t provide information that could identify you. Use a first name only, and provide general geographical information if location is necessary at all. Don’t use your personal email address publicly because you’ll open yourself up to spam.
You’ll be pleased at the many ways other patients and caregivers can help you, and you’ll feel empowered by sharing your own experiences, too.
………. ADDITIONAL RESOURCES ON THIS TOPIC ………………
Using Online Support Groups, Forums and Message Boards
Social Networking for Health Information
How to Verify Credible Health Information
Use Blogs and Wikis to Find Health Information
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