4 steps to start your own chronic illness site

December 21, 2015

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.

STEP 1: YOUR NAME

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.

STEP 2: YOUR MEDIUM

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.

STEP 3: YOUR PLATFORM

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.

STEP 4: GET STARTED

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?

WHAT ABOUT YOU?

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!

1 Comment | Isolation, Raves, Relationships: Family & Friends & Dating & Sex, Support | Tagged: , , , | Permalink
Posted by chronicrants

Yes, I’m one of them

December 9, 2015

I was talking to some friends about some tough decisions I need to make about benefits. One of them said, more than once, that I might need them for a while, but those benefits aren’t meant for my “demographic.” They’re not for people like me. But the thing is, they really are.

I understand why she said it. We both grew up in middle class families in the same middle class neighborhood. We both went to college, then graduate school. We both got middle class jobs. We followed all the “rules” and now we’re supposed to have our happy middle class lifestyles. She is a stay at home mom. Her husband earns a very large salary. She has that middle class lifestyle.

I don’t.

There’s an idea that benefits are meant for other people. The people who aren’t middle class. The people who don’t have jobs. Well, as it turns out, that’s me.

Those benefits are for people with physical and mental illness. People who can’t work. Yup, me again.

People think they’re for people who are older. But they aren’t. They’re for people of all ages. Including people in their 30s like me.

My friend means well. She tries to understand. She is one of the only people in my life who knew me before I was sick, and she understands my health problems better than most. But she can’t accept that it’s permanent because she doesn’t want to. It hurts her to think of me in pain. I get that. I feel the same when someone close to me is in pain; I pretend it can’t be serious or permanent, even when it obviously is. That’s how she feels about me.

But it doesn’t change things.

So yes, I’m one of those people. The other ones. The ones who aren’t us. Except sometimes they are. Sometimes they’re one of us. Sometimes we’re one of them. It doesn’t matter if you grew up rich or poor or somewhere in between, whether you got advanced degrees or didn’t finish high school, you can be too sick to work. And when that happens, benefits like food stamps, Medicaid, and section 8 are helpful. Even when we don’t want them, we need them.

Like it or not, we’re one of them.

6 Comments | Expectations, Frustration, Insensitive, Isolation, Limitations, Politics, Rants, Relationships: Family & Friends & Dating & Sex | Tagged: , , , , , | Permalink
Posted by chronicrants

Answering “What’s new with you?”

November 29, 2015

What’s new? It’s a simple, standard question. We all ask it and have it asked of us dozens or hundreds of times each year. Sometimes it’s like saying “Hello” and the asker doesn’t expect an answer. But sometimes they do. And sometimes, the answer is complicated.

I’m not talking about health stuff here. Well I am, but not directly.

When someone asks “What’s new?” sometimes what’s new is bodily issues. That’s probably true of anyone with a chronic illness. But sometimes it’s health-related stuff. When someone asks “What’s new?” should I tell them about my uncertainty about Section 8, fights with health insurers, problems with doctors, and about how I’m running out of room to store medical supplies at home? Should I explain my concerns around earned income and Social Security or the way that Medicare and Medicaid work together to cover costs but sometimes they fail, even when it means having to give a 20 minute explanation of the entire system just so it makes sense?

It’s like back in the days when I used to work. If someone asked me how work was going, I’d say it was good or bad, or maybe tell a funny story, but I wouldn’t talk about the boring issues with vendors or the technical aspects. I wouldn’t use terminology that I first had to define.

And that’s how it is with a chronic illness. Even when I’m not talking about my actual health, it’s hard to answer the question because so much of what’s happening in my life is health-related in one way or another.

So now I’m asking you: How do you answer the question, “What’s new with you?” Please let me know in the comments!

12 Comments | Educating, Expectations, Frustration, Isolation, Rants, Relationships: Family & Friends & Dating & Sex, Support, Thoughtfulness | Tagged: , | Permalink
Posted by chronicrants

Adjusting to my new-found support

November 13, 2015

We all know how it goes. You get sick and everyone steps up to help you. Then you stay sick, and people get busy with their own lives. It happens. I’m as guilty of it as anyone. And that’s why it feels so odd when the support is offered again.

Part of the problem, of course, is that I suck at asking for help. I should do it more. And part of the problem is that I would 2015-10-17 11.45.26be asking for help so often, my friends would get burned out. I get that. I can’t expect anyone to be visiting me every other week or helping with laundry regularly. But at the same time, I know that people forget, and that’s tough.

So when I had surgery a couple weeks ago, it was wonderful that so many friends stepped in to help and offer support. Suddenly there was an outpouring of good wishes, emails, and phone calls. I’ve gotten visits and thoughtful gifts (like a gift card for grocery delivery!) After so many years of poor health, this all feels a bit strange, but it’s far from the strangest part.

The strangest part is every time someone looks at my foot and comments on the cast. I don’t know how to respond when someone asks if I’m in pain or if I’m having a tough time. I won’t lie to you – this isn’t easy. But it’s not that bad, either. I’m stuck at home, but the truth is that I’m often stuck at home, this is just for a bit longer. It hurts, but very little compared to my normal daily pain, and a hell of a lot less than the original injury. I’m limited, but not so much worse than usual. I’m frustrated, but that’s nothing new. It stops me from doing things what want to do, but that’s like all other days. Yet people ask about it as if it’s so different.

The truth is, I feel better this week than I have in ages, thanks to the change in seasons and my forced increase in rest time.

In another month I’ll be back to “normal” and the extra emails, calls, and visits will have ended. For now, I’ll just enjoy it while it lasts.

3 Comments | Expectations, Isolation, Kindness, Limitations, Raves, Relationships: Family & Friends & Dating & Sex, Support, Thoughtfulness | Tagged: , , | Permalink
Posted by chronicrants

« Previous Entries
Next Entries »