Van Gogh's "The Portrait of Doctor Gachet"
LymeMD made a particularly interesting post last week about the role the disease plays in the lives of certain people.
The sick role can become integrated into the disease. Perhaps, ironically, some readers of this BLOG focus all of their attention on their illness–scouring discussion forums, constantly perusing the Internet, seeking some new tidbit of esoteric information. The disease becomes a life style.
I know I use to spend a disproportionate amount of time on the various community sites when I first got sick. Now, I hardly ever visit. While I think it’s important to inform yourself and understand what’s going on with your body and the disease, spending hours online in not healthy or helping. I rarely visit these sites anymore except for when I have a specific question about something. And when I do visit, I ask my question or search for previous discussions on the subject and get the hell out of there. No loitering.
The turning point came for me about eight months ago. I read a frantic post by a woman who was convinced that a telecommunications satellite, that NASA had reported was losing altitude, was going to crash down on her house. She was terrified and there were endless responses to her message with equal panic. I started thinking, “WTF am I doing here?” I decided to block myself for a month from reading anything Lyme related online. It was one of the best steps I’ve taken to dealing with my illness.
Yeah, I have this blog and, but I don’t post all that much and the Lyme-related stuff I do post is more for me to keep track of things than anything else. Almost all of my other content is more related to athletics than it is to Lyme — and there’s certainly a lack of athlete-focused Lyme information available. I feel as if I’m filling a gap somehow. As long as the balance remains this way I think it’s a healthy outlet; a helpful component to managing and overcoming my illness.
Anyway… think about it. You have Lyme. Lyme doesn’t have you. Have a good week!
I like Lyme MD.
I think it can become a habit, looking at those boards. Personally, it is easy to feel so alone in this, that the boards make me feel that there is someone else out there. To be fair, there are also many intelligent people on those boards with a lot of insight.
However, I agree that it is not always the most proactive thing to do, as it often ends up bringing me down more than anything else. So I take it in small doses. I am on for a few days to sort stuff out and reach out, then off for a few weeks.
Blogs like yours definitely have their place, as they can help serve as a positive place for people to get information. Nice work.
@Maura… you’re very right. There are a lot of smart people on those boards. I didn’t mean to disparage them or make light of their efforts to help and educate.
Another thing about the boards is that, for the most part, only the sick are chatting there. The majority of people who get well move on and never come back. It’s depressing to read all the down and “I feel like I’m dieing” posts.
Glad you like my blog. Thanks!
You must be careful with back pain as the consequences can be dangerous so findrxonline indicated in an article on the subject, I suffer from chronic fibromyalgia for a few years ago I had a tug on my lower back and has gotten worse over time, I have visited many doctors and to ease my pain I was prescribed narcotic opioid drug that is like vicodin, oxycontin, lortab that help curb these terrible back pain.
I agree. I’ll add that sometimes I go there to help lend advice to the eye-afflicted ONLY, but I realized early on that too many people, well-meaning, add comments based on little more than their experience. Too much confusion and outright panic can be induced when people that are trying to help (or see themselves published on the internet) provide incomplete answers to what we’ve all come to understand is a very, very complicated disease.
BT
@Bob… yes, the “I’m not a doctor” disclaimers that people put in their post signatures are always interesting too.
Very nice post, Chronic Triathlete. I found that being online in any unfocused way can be, ultimately, a frustrating waste of time. Facebook always makes me feel as though something has been sucked out of me, ditto for looking for the right pair of shoes. I’ve also learned to limit myself online to doing a specific search, writing a post, etc.
Also you raise the constant conundrum of how do we reach out to others so as not to feel isolated, without dragging each other down. It’s a delicate balance.
I strongly agree with your outlook on this. Your blog and two others are really the only ones that I have stuck with after my initial dive into the information upon diagnoses, mostly because like you I found that the other sites tended to “bring me down.” I found the same challenge with the support groups that I attended twice. I would walk away more drained and sorrowful that I felt like it wasn’t helping my mental state of being.
As you mentioned, your blog bridges the large gap in what appears to be the none topic of athletics and Lyme and in addition you post some very interesting, often philosophically charged topics that get your readers mind out of the Lyme mode that most of us can get lost in.
Your blog is both encouraging (always) and intriguing. Your topics make me feel (and I am sure others as well) like I am not re-inventing the wheel. Your a “healthy” source of information and my rule about limited Internet for Lyme is out the door with your blog.
This was a good topic to address!