Avoid Online Drama

Ironic though this subject may seem for a cancer blog, it’s an important one to discuss.

The development and rise of the online world has proven a tremendous boon for patients. The internet is being used more and more to provide information, assistance, services, and even care. Just like any technology, however, the internet can prove harmful, too. It can create confusion, foment fear, and spread dis- or misinformation to vulnerable individuals at a critical time in their lives.

For the Newly Diagnosed

If you are newly diagnosed, now is not the time to be visiting all the listservs, Facebook groups, and discussion boards related to your disease. I know you’re starving for information about the diagnosis your doctor just pinned on you, this new label you suddenly have to come to terms with. But what you want is the right information not just any old information. You need the pure data, the good stuff. Sure, sensational tales of cures or photographs of worst-case scenarios may be like a tasty dessert buffet, but it won’t nourish you and help you grow in understanding your situation.

Where can you find the good stuff? I recommend looking to a) your doctor, b) patient support organizations (PSOs), and c) other authoritative sources.

Your Doctor as a Source

If your doctor has just laid a diagnosis on you, I seriously hope he or she has given you some fundamental information about your condition. If not, shame on that doctor! Ask them for a primer. It may be only a brief synopsis of your diagnosis from his or her medical database, but it’s a place to start. Your doctor should also be able to help point you in the direction of other resources.

Patient Support Organizations

The curated collection of information available from patient support organizations is a tremendous source for all of us and especially for the newly diagnosed. Presented without most of the scientific jargon in order to be accessible by a patient audience, this info has usually been reviewed by experts and represents solid, medically-accurate data.

If you don’t know the patient support organization for your diagnosis, just plug the name of the disease into an internet search engine. Your PSO should show up on the first page of results. If you don’t see it, add the word “organization” and try again. If you still come up empty, your diagnosis may belong to a larger group of diagnoses which together are represented by an organization. That info can usually be found in the wiki or definition of your condition. As a fallback, if you have a cancer, there’s always the American Cancer Society.

Other Authoritative Sources

There are plenty of additional sources available to patients online these days. Government agencies and institutions, educational institutions, well-respected research centers, and authoritative medical publications can all be found on the internet. While the information from these sources is often highly technical, it’s worthwhile consulting them. In my own experience, I’ve run across some invaluable data from government and educational institutions that has helped me make important decisions. I’ve listed a few on the resources page of this website.

Once you have a solid underpinning, a foundational understanding of what your new diagnosis means and the treatments available, then a visit to the wild, wild west of the disease discussion boards, chat rooms and Facebook groups is less likely to create any drama for you. You’ll be able to recognize the snake oil salesmen, the crackpot theories, and the pie-in-the-sky promises, parsing out the good from the detritus. And believe me, there is good there. Personally, I’m on a disease listserv which has proven invaluable in my journey. It’s moderated which helps.

Wherever you decide to collect info about your diagnosis, I hope you’re able to find what you need. Please remember to use due caution and rely on the knowledgeable, authoritative sources.

2 comments

  1. I had never heard of a “Total Parotidectomy” until I was advised that the tumor was so large we needed to remove it quickly. Normally or in the past, I would have researched diligently and learned all I could, but it all happened so fast that here I am at almost 6 weeks past surgery, finally doing some research online and it is overwhelming! In fact, I’m glad now that I did not know more than what my doctor told me at the time. 🙂

    And now that I see how much is online about this unusual cancer and the often side-effect of loosing my left facial nerve, I have decided to let my doctor advise me on what to read and do in the way of follow-up. He can filter out all that stuff I don’t need (which is most of it!). And I am going to have to trust him on what to do next, like he recommended the eyelid surgery which a ophthalmologist just performed and it already has given me more use of my left eye now, which before I kept covered with any eye patch. One step at a time!

    I’m even slower at joining a “support group” because of one I briefly belonged to in an earlier year that turned out to be a “pity party” (for parents who lost a child to death) which to me was more harmful than helpful. But I plan to slowly and cautiously check out what, if anything appropriate, is available for someone who lost their left facial nerve to cancer. Now I have to start another related journey call radiotherapy and know that there will be adjustments there too. And I’m sure support groups! 🙂

    Liked by 1 person

    1. Oh my! Curated information can be especially helpful early in our journey. Good to hear the recent procedure has been helpful. The important thing with support groups is they have to work for you. I auditioned a number of groups before I found a place!

      Like

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