When you’re diagnosed with a chronic illness, it’s a great idea to get online and try and find other people who know what you’re going through. Blogs like this one can make great reading, especially when you need a little affirmation. But it’s also really important to connect person to person through sites like facebook and twitter. Engaging in conversations is a completely different treatment than writing your feelings in a journal or blog, and it’s just as important.
A lot of people really love online forums – and I think forums for chronic illness are a great idea. Unfortunately, I’ve never had a good forum experience, especially in the chronic illness realm of things.
There are a few things wrong with forums in my opinion, but they aren’t inherently bad. Like I said, it’s a good idea, and if you’ve found a forum that’s offered support and friendship then please link it in the comments below!
I should also preface my experience by saying that I’ve never joined a forum that was exclusively set up to talk about chronic illness. Maybe they’re great! I have no idea. I haven’t sought one out because of my past experience with online forums.
So, what’s my problem? Number one, cliques. In every forum I’ve ever joined, there are already super strong bonds. You can jump into a conversation if you like, but the odds that anyone will respond to you are low if you’re new. Often, the responses you do get can be condescending. Forums are kind of like being a new kid at school mid-semester. You have your work cut out for you if you want to jump in on a discussion in the cafeteria.
Let me start at the very beginning. I’m not going to count things like Neopets or Gaia Online that I played with when I was a kid. Those forums are part of a sort of game, and they work a little different (though cliques are still VERY present).
The first time I tried out a forum, I was just diagnosed with endometriosis. If you just google it, you only get medical sites and definitions. Blogs and social media just don’t show up. One of the first places I turned to find someone like me was the internet. I had just gotten engaged before finding out I had endometriosis – these events were only weeks apart. I had joined a wedding planning forum when I was proposed to, and that’s where I decided to test the waters and try and find fellow endo girls.
After fishing around the emotional boards, I decided to post my own thread. I said that I was newly engaged and had just found out I had endometriosis. I tried to explain what the doctor had explained to me, including the fear that it might mean I won’t be able to have kids. I expressed that my fiance had been supportive but that our stress levels had risen considerably, and that I was frankly scared. I was scared of being sick and I was scared that it was going to ruin my wedding and maybe even end my marriage before it began.
And I did indeed get responses from other ladies with endo.
Except that they were extremely hostile.
One, I hadn’t properly explained what endometriosis is. My problem was stupidity. They suggested I actually learn my stuff before posting online, and maybe if I wasn’t so ignorant and whiny I could solve my own problems. After all, they had endo too, and I didn’t see any of THEM crying about it.
After that, it would be literally years before I decided to start my own blog and write about what I learn and experience, fears and all, in the hopes that some other terrified 19 year old girl might find a bit of actual help if she went looking for info. Through this blog I learned about the twitter communities and got involved with chats and roundtable discussions that were all sympathetic and open to newly diagnosed and frightened people.
I did get involved for a while with a forum called Vinylnation, which doesn’t exist anymore but used to be an online community around Disney’s Vinylmation, collectible figures that used to be exclusively sold at the parks.
The online community was awesome because you could trade figures with other people, pay people who live near the park to pick up new releases for you, and it was one of the only ways to hear about new releases and events. At first, the trading was extremely cliquish, but the people on there who were rude right away were quickly admonished by other users, who told them that we want to welcome new collectors and should be kind. At the end of the day, it was a forum about toys, and there was no reason for anyone to be nasty to anyone else.
I talked some there about being sick. Mostly sharing my own story rather than asking questions. I even had some forum friends send me vinyls while I was in the hospital for surgery. It was a really awesome group of people, but eventually facebook groups just became easier to keep up with. Another big problem with forums is that it’s an ongoing conversation, and if you’re away even for a couple of days, it can take hours of reading to catch up on even just a few threads to discussion. For me, it eventually became very impractical, and I simply couldn’t continue to devote the time it needed to it.
My latest experience in the world of forums has been with the What to Expect When You’re Expecting online boards. Once again, I thought it was a really great idea – there are individual forums that correspond with your due date – so literally everyone on my boards are due around the same time as me. Fantastic, right?
Well, it’s still a forum. This brings me to the third big problem with forums – not reading/listening. I would respond to a thread here and there but so far no one had really acknowledged me. One day, I started my own topic. I was excited to announce the news to my parents, but my dad was about to go into open heart surgery. I asked if anyone had ideas on a very calm way of announcing the news, as not to overly excite a Grandfather-to-be’s heart.
Aaaand what I got was everyone in my group telling me how they told or planned to tell. Calm? Nope. All sorts of crazy excited things which is great, I get that you’re excited. But there are a million other threads that were just for announcement ideas. Nobody read what I was really asking. And it solidified in my mind that forums just aren’t for me.
Forums are exclusive, time consuming, and often full of white noise as there’s a lot of talking but not much listening. I much prefer twitter and facebook, where conversations are a bit more intimate and people are more willing, overall, to actually discuss something rather than just trumpet off status updates. Comments tend to actually be comments on what you’re talking about. Maybe I’ve just struck gold with some great groups of people, and maybe there are some “gold” forums like that out there. I’ve yet to find any, but maybe they exist.
What are your thoughts? Would you advise newly diagnosed patients to seek a forum for support, or do you prefer facebook or twitter? Or perhaps you prefer blogs, where you can get your full thoughts out and also get the chance to comment on other people’s full thoughts? Or do you find all social media to have these basic flaws? Tell me all about it in the comments below!
I do want to end by saying whoever you are, you’re welcome here. On my site, I’ll treat you with respect and kindness, and I will not tolerate other users pushing people away. There are absolutely no stupid questions and I hope that whatever stage you’re in, you’ll find some insight and encouragement here. Thanks for reading! And I hope you’ll subscribe or visit again soon.