• The Chronically Ill Blogger 101: Do's and Don't's

The Chronically Ill Blogger 101: Do’s and Don’t’s

I’m often asked why I don’t post about POTS, Diabetes, Cancer, ME/CFS, Lyme Disease, etc, like I do Rheumatoid Arthritis, Lupus, Sjogren’s Syndrome or FMS. I’m asked why I don’t write “in depth” posts specific to the former disease(s) listed.

Here’s why: I do not have POTS. I do not have Diabetes or Cancer, ME/CFS or Lyme Disease. When I write, I write an article that can be relevant to all or most chronic illnesses, but I will not write an in depth post about a disease that I do not personally have experience with and therefore am not knowledgeable about.

I will post outside links/resources for diseases I am not familiar with, but not without doing some research and talking to people who have the diseases to make sure I am posting accurate and appropriate information. Generally, I will not post a link related to signs and symptoms of a certain disease. I will, however, post a link related to a genetic discovery or new finding/research.

It is a huge problem when chronic illness blogs post a “General Symptoms/Signs of ______” when the writer does not have any experience with the disease. Anyone can go on to WebMD and learn about a disease, but not everyone can write an article about a disease and really know how to best describe it or do it safely. Especially with Rheumatoid Arthritis. Most articles that come up via Google search fail to disclose over half of common symptoms: fatigue, weight loss, fevers, organ involvement, etc. Sharing the wrong information online can be harmful.

I have written about this before and I’ll reiterate it again: I once found a Scoliosis-related tumblr run by some teenage girls who were claiming milk could cure and prevent Scoliosis. Anyone with Scoliosis should immediately realize this information is a load of crap, but for a handful young, impressionable, adolescent patient-followers that were believing this without doing any research, consulting with parents/physicians, this pseudo-science was harmful. Now magnify that kind of situation with more complex conditions and thousands of followers. See where the concept of doing more harm than good comes into play?

DO & DON’T:

DON’T post outside resources that do not adequately portray a certain disease, lack information/symptoms, or suggest a cure for an incurable condition (discussing a treatment is different than a cure)

If you’re unsure about an outside link, ask someone who would know if it is a good resource or not before you post it.
DO refer a follower or anon to a blog that is specific to the issue if you are not qualified to answer it.
DON’T just do some reading about a condition online and write about it as an expert.
DO send a message over to Cranquis for some anonymous physician input (assuming his ask box is open ;)
DO have a disclaimer on your blog that addresses the purpose of your blog’s content
DON’T copy and paste a blogger’s post; reblog and cite the source
DON’T steal an idea and use the same title and content unless it’s medical information-based rather than opinion/personal, and even then: write it in your own words and cite the person who inspired you to write the post/gave you the information.
DON’T change the name of a post when you reblog
DO alert other bloggers when you include their links, information, or quotes in your own material

Most of you are not young teenagers and those of you that run blogs similar to mine in purpose need to be aware that you can do harm through the internet, especially when blogging about chronic illness. It’s disheartening to see people rely on poor information or the internet instead of seeking out a physician’s (or multiple) opinion or taking that information to the physician. It’s disheartening to watch impressionable adolescents dealing with a scary diagnosis receive false hope. It’s sad.

If you’re an Autoimmune Arthritis blog, stick to writing in-depth articles about what you know. If you’re a Neuroblastoma-related blog, stick to writing about Neuroblastoma. I wouldn’t go writing an in-depth post about cancer; I would instead post a link to a blog with an author that is qualified to write about cancer.

If you’re going to be a chronically ill blogger and post more than just your own personal experiences (i.e. sharing outside information), you have a responsibility to not misinform people, or correct your content when a mistake is made. As a follower, don’t be afraid to question what you read, discuss it with physicians, and take everything with a grain of salt. It’s okay to send a message to a blog pointing out that an article they posted is flawed or ask a question about something you’ve read. I have followers do it (and I’m grateful for it!), and I do it to other blogs. It’s not about being pompous, malicious, conniving; it has nothing to do with competition or being negative. It is about making an online community of chronic-bloggers a safer, more knowledgeable and aware place. This is another part of being a patient advocate. No chronic illness is a one-fits-all deal and any blog that doesn’t acknowledge that in their content is only doing their followers a disservice.