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
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Am I doing enough?

December 15, 2015

A friend called me and was upset. She had just spent a while talking to a friend of a friend with the same diagnosis as her, but who was doing a lot better because she had done a lot more research and tried many more treatments. My friend felt like she wasn’t doing enough. I knew that feeling well. I’ve had it many times myself. Maybe you have, too?

I think it’s common to feel that way. After all, we’re taught that when we’re get sick we go to the doctor and get better, so when we don’t get better right away, we wonder if it’s our fault. Then we read about someone who was magically cured through their own research and we wonder why we haven’t done the same.

Of course, not every illness is easily cured by a doctor. And those magic cures are often individualized treatment plans that were figured out through years of research and trial and error. We see the results, but we don’t see the backstory. Meanwhile, we’re all in the middle of our own backstories.

The thing is, if you’re doing all that you can, that’s enough. It has to be. I know people with my same diagnoses who can not only work, but jog every day and go hiking. That’s great for them, but I can’t do those things and thinking I “should” isn’t helpful. In the same way, someone might be able to do a lot more research than I can. And that’s ok. Someone else can’t do as much as me, and that’s ok too.

About 4 years ago, I started to do my own research. It was hard. Damn hard. I was so fatigued that I could rarely read more than 5 pages at a time without falling asleep. The brain fog was so bad that I had to read each paragraph multiple times before I understood it. Often I read a few pages, fell asleep, woke up with the book on my lap, and had to reread what I’d just read because I’d forgotten it all. But I kept going because I was determined. It paid off, because it led to me doing so much better. Sounds like something everyone should measure up to, right?

What you didn’t see (because I’d only started this blog earlier that year) was the several years before that where I’d given up hope. You didn’t see the years, yes YEARS, that I hadn’t wanted to do any research at all and had resisted encouragement from others. You didn’t see how long it took me after doing the research to actually put any of it into practice. And yes it has helped, but I’m nowhere near “better.”

Would my health be better now if I hadn’t put off doing research for years? Maybe. Maybe not. A lot of what I found wasn’t available 5 years earlier. I wasn’t sick enough back then to be willing to try some less conventional approaches. And it doesn’t matter. Because I did what I felt ok with at the time.

I wasn’t ready to do the research then. And that’s ok. I was doing the best I could. Physically I put all I had into working, exercising and physical therapy, taking care of myself, and having just a bit of a social life. Emotionally, I didn’t have the capacity to do the research. And that’s ok. I did as much as I could. So it was enough.

Sooner or later, you’re going to feel like you’re not doing enough. When you do, remember that if you’re doing your best, that’s enough. One day your best might be hiking up a mountain. Another day your best will be brushing your hair. Whatever it is, it’s enough.

As for my friend, she’s feeling a bit better now. I told her everything I’m telling you now, and then some. I pointed out that the person she spoke to had had her symptoms for many more years than my friend had. She’d had more time to try things. She’d had more money available to try things. We don’t know how severe her symptoms were or weren’t. And I pointed out that my friend has recently tried several new things and is currently waiting to see if they work. She’s already seen some small improvement. Waiting isn’t fun or exciting or sexy, but it’s necessary. It’s nothing to feel bad about because it has to happen. The person she spoke to had a lot of time to try things out and wait to see what happened. There’s no point in my friend feeling bad because her “during” doesn’t compare to someone else’s “after.”

So what about you? Do you ever feel like you’re not doing enough? And when you do, how do you handle it? Please share your thoughts in the comments.

2 Comments | Educating, Expectations, Frustration, Healthcare, Limitations, Raves, Relationships: Family & Friends & Dating & Sex, Support, Symptoms, Unpredictable | Tagged: , | Permalink
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Freaking out about the possibility of Section 8

November 27, 2015

Life has never been easy or predictable. At one point I thought it was, but back then I assumed I’d have my PhD, be married and have kids by the time I was 30. Now I’m well past 30, I haven’t spoke to that guy in 13 years, there are no kids, and I never did finish the PhD. I have no regrets. I’m just saying, life is unpredictable.

And in case I dared to forget it, the last few hours have reminded me all too clearly.

Life has been less certain than ever since I left my job 4 years ago. I can’t believe it’s been that long. Still, after a ton of work and effort, research, new doctors, new treatments, and fighting with insurance companies, I finally reached a point where I felt I might be able to do a little part time work. I was nervous, but also hopeful. It would be so nice not to have to worry about being on benefits that didn’t cover all the bills.

Today I did some work on that new business. I was feeling really excited about it! At 4pm I was jazzed, telling my mother all about my new plans and progress, outlining some next steps for myself, and imagining the possibility that this might actually work! At 5:30 I decided to check the mail. At 5:35, everything changed.

I had an unexpected letter.

I’m near the top of the waiting list for Section 8, so they want to start getting my paperwork ready and have an interview with me. Holy fuck! What just happened???

For those who don’t know, Section 8 is a housing voucher program. If you earn less than a certain amount, you’re eligible. Typically, you then pay 30% of your rent and the government pays the rest. There aren’t a lot of vouchers and the waiting list is long. When I signed up, I was told the wait was 3-4 years, so I put it out of my head. Whenever it popped back in, I reminded myself that I had a long wait and shouldn’t plan for it. And now, a year and a half later, it seems like it could soon be a reality. Sounds good, right?

Of course, like with anything, there are a few catches. For one thing, if you start earning more, then you lose the Section 8, and I don’t know what happens then. Would I have to move? And to use it in the first place I might have to move, and my choices would be very limited. Not all landlords accept Section 8 vouchers and I don’t know if mine does. Many don’t. Then there’s the problem that there are rental limits, and they’re pretty low for this area, so that makes it significantly harder to find a place.

Of course, this is just what I’ve heard and read. The truth is, I don’t know a lot. I have so many questions, but I got the letter at 5:30pm on a Friday, of course, so I need to wait all weekend before I can call and ask any of them.

So now I’m wondering, is this a good thing? It seems like it should be a good thing. If I’m doing the math right, this would mean I could almost cover all of my bills every month! There would be a small gap, maybe $50-$100 per month, but I could handle that. I get paid for small jobs here and there, and I get birthday and Chanukah checks, so I’m sure that wouldn’t be a problem. And would it be amazing to not have to worry about money?!? Ok, sure, I still wouldn’t have anything extra. It’s not like I could suddenly start eating out more, buying more clothes, or traveling. But it’s not like I really have to do any of those things anyway. So…. maybe this is good?

I’m nervous. I’m so used to things going wrong that it feels like there must be a big catch here that I’m not seeing yet. But then, what if there isn’t….?

If you’re on Section 8, what has your experience been like? What questions should I be asking? What should I know?

 

3 Comments | Expectations, Politics, Rants, Raves, Unpredictable | Permalink
Posted by chronicrants

Standing scared on the edge

November 20, 2015

It was always the same. The instructor was telling me to jump. I could feel everyone’s eyes on me. I knew it was safe. But I was terrified.

Some kids love jumping off a dock and into a lake. Those kids probably

5-9-2012 10-20-06 PM

Wish I could swim like these cuties!

know how to swim. Those kids probably aren’t scared of the unseen mysteries beneath the murky surface of the water. I, on the other hand, wanted to stay safe and dry on the dock. No such luck.

I did eventually learn how to swim. One day I was standing at the edge of a pool talking to someone, and a kid pushed me in as a joke. I had to be rescued. The next day, I finally learned enough to stay afloat. But in general, I’d rather learn how to stay afloat without feeling panicked as I sink to the bottom of a pool.

Now I’m standing at a different kind of edge. It’s just as safe (mostly but not completely) and just as terrifying (very.) I’m about to start a small business. I decided to do this months ago, but I wasn’t committed to it. This week I decided to commit fully to giving this a try. I might fail, but I have to try.

I still don’t feel like I can commit the kind of time necessary for this. I know someone who has a new baby and works a full time job and is starting a similar business, yet she’s finding the time. But then, she doesn’t have brain fog, chronic pain, chronic fatigue, and a huge number of medical appointments to deal with. Still, I should be able to put in at least a little bit of time.

Ok, I know I’m being a bit vague about the business. That’s partly because I want to maintain my anonymity here but also because it’s really irrelevant. I plan to write and sell a short book (I’ve written the first draft but still have a lot of work to do on it.) I’ll create a blog. And I’ll try to sell the book and other things (maybe an online course?) to people. The key is that I’ll be working my own hours. It will take twice as long for me as it might for someone else, and I have to be ok with that. I might plan to work 3 days this week and manage 5. Or it might end up being only 1. Or none. And that will be ok.

I’m worried about the impact on my benefits, especially social security, at the beginning. But then, I also know that I can’t survive on benefits indefinitely. Right now I’m taking money out of savings each month to make ends meet. That’s fine for now, but one day those savings will run out, and then how will I get by for the next 4 decades? No, it’s better to not have to be on benefits at all, to cover my own expenses with my own business. So I’m going to try.

I face my fears every damn day with these illnesses. I worry about my health in ways most 30-somethings never even consider. It’s time to face a different kind of fear and take the leap. I don’t know how to do this, but maybe I’ll find a way to stay afloat anyway.

 

3 Comments | Decisions, Expectations, Fatigue, Job, Limitations, Milestones, Pain, Raves, Unpredictable | Tagged: , | Permalink
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