4 steps to start your own chronic illness site

I started this blog four and a half years ago without knowing what it would become or how long it would last. What it became was my lifeline. It has helped me in more ways than I can say. It provides me with an outlet for my thoughts and feelings, a community, people who understand, a way to stay connected when I’m feeling isolated, support, and so much more.

Readers have said they wished they could blog and/or communicate on social media. Well, you can! And it doesn’t even have to involve writing.

I’m no social media expert, but I know a bit, so let me share some of what I know with you.


First, decide if you’re going to be yourself or anonymous. I chose to be anonymous for this blog. A bit over a year ago I started a Tumblr account under my read name. Tumblr is very different. I also have a blog under my real name, but it’s business-related and has nothing to do with chronic illness.


Now that you have your name, decide how you prefer to communicate. Choose 1 or 2 ways to start. You can always add more later. You could write, speak, or do video. If you found this blog, you probably know how to find others. Look on YouTube for examples of videos and do online searches for podcasts. Get a feel for what’s out there and think about what you’d like most.

Another option is to create photos, memes, and things like that. Or you might choose to share what others create. My Tumblr account is almost entirely  reposting what I see in my feed. I only write my own original things rarely.

Are you an artist? You could draw cartoons, share paintings, or share photos of clay work.


For blogging you can go to WordPress.com and create a free account (or pay $20 per year for your own domain) or you can set up a hosted blog that you pay for on WordPress.org. There are other blogging sites, of course. These are just the ones that I use.

If you want to make videos, you can start by posting them to YouTube.

I don’t know anything about creating podcasts, but I bet you could find a few handy dandy guides online.

To share short thoughts and memes, try Tumblr and Twitter. They’re very different and are both worth investigating. I started out on Twitter and did well there (you can find me at @msrants) but the atmosphere has changed and so have I, and now I’m more comfortable on Tumblr. Create a couple of free accounts and see what feels right.

Do searches for #chronicillness #chronicpain #chronicfatigue #spoonie and other tags, including tags for your diagnosis. If you like what someone is posting with those tags, follow them. For example, on Twitter I follow activists. On Tumblr I follow activists and people who share funny chronic illness memes, because sometimes I just need to laugh at this stuff. Of course, I also follow people who post nothing but photos of cute dogs…. you can definitely branch out!

If you’re going to share photos, check out Instagram. Again, look for tags to help you decide who to follow.

I don’t happen to know anything about Pinterest yet, but I’m sure it has some fabulous chronic illness resources, so check it out and see if it’s something you’d like to participate in.

Finally, there are a lot of general chronic illness groups on Facebook and also specific groups for certain symptoms and diagnoses. You can create your own page and start building a following, though I think it might be a bit harder to get followers there than with some of the other sites.


You’ve decided whether to use your real name or an anonymous one. You know if you’re going to write, speak, draw, video record, etc. You know which social media platform(s) you’re going to use. Now go do it! You might not get a huge following quickly and that’s ok! When I started this blog it took a while to get followers. Now I have a few hundred. My much younger Tumblr account has almost 1200 followers. Does it matter? To some people it does. To me it doesn’t. I’m getting exactly what I want. I’m writing and I’m building community. What could be better?


Has this post gotten you to start thinking about starting your own blog, podcast, video channel, or social media account, etc.? If so, let me know! I’d love to hear your thoughts. And please ask questions and I’ll answer them the best I can.

If you already have your own site, please comment and fill in anything I’ve missed. I’m sure there’s a lot. I have no desire to learn every form of social media communication. I’d rather spend the time writing here!

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