The Internet can be a blessing and a curse to those of us with medical issues. Support is crucial in surviving with chronic disease but playing doctor can be deadly. Take for example my own ongoing battle of Essential Tremor Symptoms. It’s like a game show, “Wheel of Symptoms.” Pick a symptom, describe it in detail and try to figure out if it is related to Essential Tremor or another condition/illness altogether.
If I Google my symptoms, I get a whole range of sites from legitimate, like Mayo Clinic, to questionable like Better Living Through Organic Vitamins. As you try to weed through these, it becomes hard to figure out which ones are sponsored by a medical entity like National Institutes of Health and which are sponsored by a commercial entity that is ultimately trying to sell you something. That is why it is so helpful to begin with a list of reliable sites:
- University of Florida Health
- University of Florida Center for Movement Disorders and Neurorestoration
- Mayo Clinic
Eventually you wander to a site that is either a support group or a group page on Facebook, for example TremorAction. Here you can either post your question about your symptoms or scroll through to see if anyone else has already found a solution. I get some great insight into dealing with tremor and my other issues by reading support group posts on the groups I belong to on Facebook. There are wonderful, caring people who are willing to share their own experience to help you. They are generous to the point of sharing their own embarrassing tremor episodes.
When you are first diagnosed or have a new symptom, support groups are wonderful. You can vent and have people support you who have been there done that. Often they may have a solution or work around you had not thought of. That is the strength of collaboration, the communal brain.
The danger is when support group individuals play doctor. Even if the individual is a doctor in real life, they cannot ethically offer medical advice. One patient may say they had side effects but the reader must know or better yet be reminded that, “Your mileage may vary.” Sharing support is great.
Sharing what works for you is terrific. Sharing that exhaling while putting on eye makeup helps steady your hands is priceless. Stopping a medication without checking with your doctor because someone online says it worked for them is stupid. Telling someone to do change or stop medication without their doctor’s knowledge is wrong. Your online support group can be a partner in your medical treatment but not at the expense of leaving your doctor out. Common sense needs to be the first and last word in all online medical advice.
TAN Blog Editor