Thursday 27 October 2011

Blogging and Chronic Illness: Reclaiming Your Voice

I'm often asked why I blog. Or, as my sister put it "Why put yourself out there? It's dangerous. A serial killer could hunt you down, chop you up, and send your boxed head to your husband in a dusty power line-filled field".  Okay, she might not have quite added the Se7en reference, but her 10 minute panicked rant did come close.  You should have seen her face when I casually mentioned I also vlog.  I should have heeded my own advice of "don't poke the bear". But sometimes I just can't help myself.  My sister's response, whilst a tad melodramatic, is not unusual.  Unless you are a blogger or use social media, it can be a hard world to understand.

Putting your life out into the public arena can seem strange. I'll have to admit pre-blogging I couldn't quite understand the appeal. But two years later, it has become a normal part of my life.  It is an outlet. My therapy. A chance to process events and my reactions to them.  By the time I push 'publish', I am generally in a much better place than when I first tapped out a group of disjointed words on the keyboard. There are generally less expletives in the final product too, which I'm sure makes my mum and mother-in-law quite happy.

It is easy to lose yourself in illness.  It becomes harder and harder to judge the past.  Am I worse? Am I better? Am I just the same? Blogging provides a written reference of changes, good and bad, over time.  It takes away the guess work and gives me a reality check, especially when I am being swamped by the maelstrom of emotions and hyped up symptoms that occur periodically.

Blogging is perfect for those with chronic illness. When you are ill, particularly if you are stuck at home, you often feel like you have no voice. Blogging can be your voice.

I am in no way a blogging expert. I can't be bothered reading the rules. And frankly, even if I did I'd still just do my own thing as I'm too lazy to make sure I've checked all the blogging boxes. Lets see, eat a block of Lindt, or check rules? It's not exactly a difficult decision.  Of course my lack of expertise wont stop me from giving my opinion. Here are some of the positives to as to why you should consider entering the blogging word and some of my basic tips for blogging.

Why should you blog?

You don't have to frock up.  
You can blog in your manky pjs whilst drinking coffee.
Or, blog in your manky pjs, whilst drinking coffee and wearing a bright pink feather boa. 

No one will ever know, unless you post photo's like a mad woman. (Note: clever placement of coffee mug to conceal face and appease melodramatic sister.  Mind you, no one really wants a crazy Kevin Spacey turning up on their doorstep, so she may be onto something. Don't tell her I said that. I couldn't stand the big sister smug 'I told you so" face).  

Blogging doesn't require a fancy office. You can blog lying on the couch, your bed, on the floor, or with your legs up a wall. You can blog in your backyard, in your bathroom (cool tiles are important), or from a hospital bed.  Essentially, it is perfect for those with chronic illness.

The hardest part can be doing that first post. I can tell you now, you will never be fully happy with your first post.  You'll draft and re-draft until your fingers are little more than bleeding stumps.  You'll look back in two years and ask yourself "what was I thinking".  This is almost always followed with the ostrich method of dealing.  Head stuffed firmly in the sand whilst repeating the words "it doesn't exist if I don't believe it exists", and a pointless vow to avoid further trauma by not reading that post again.  If you're anal like me, self-flagellation is order of the day. So you might as well just grab a margarita and get comfy.  My tip: write a post, about anything. Put it aside for a day.  Come back read it again, edit and push 'publish'.  It's like tearing off a Bandaid.  Don't think, just do it. You'll realise after it wasn't that painful.  Each subsequent post will be easier. I promise.

If you want people to read, and lets face it we all do, even when we say "I just write for myself", make it user friendly. Remember that the majority of your readers are also likely to have a chronic illness.
  • Use paragraphs, short ones if possible: It is really hard to read a post that is one big paragraph. Attention and concentration are not our strong points. Nor is visual tracking.
  • Use a plain background: It is near impossible to read text on a patterned background. I know personally, overly patterned backgrounds can set off a migraine, or at least a bad headache.
  • Use a large, basic font: again small font is hard on the eye.
  • Plain black font on a white background is easiest to read: You can still have a colourful boarder and header, but leave the text space plain.
  • Use pictures: This breaks up the text and again makes it easier to read.  
  • Don't use Captcha or Word Verification: These are a sure way to make people move on without commenting. You get little spam when you are starting out anyway.  I was really excited when about 6mths in I got my first "enlarge your penis in 10 days" spam as it meant that I was getting more traffic.  Most platforms will also have spam detectors inbuilt.
  • Comment on other blogs: If you want people to read your blog and leave a comment it is a bit of a quid pro quo. Show an interest in someone else's world and many will come to check out yours.
As to what you choose to include or not include in your blog that is a purely personal decision. Like other forms of social media, if you use The Billboard Rule, ie If you wouldn't want to see it on a billboard don't put it out there, you should be okay. Not that I really want to see "Michelle has chronic diarrhoea" on a giant billboard as I drive into the city.  But I also know that my apathy and tendency towards meh, would mean I probably wouldn't care all that much. Most blogging platforms (eg Blogger and Wordpress) will also allow you to keep your blog private, or invitation only. So you can choose who can see what you write. 

Most importantly simply share your story, whatever that may be. Readers can spot a formula, or insincerity at a thousand paces.  Everyone has a story and it is far easier writing about something that stirs you, rather than a topic you think might be popular. The reality is no one else will tell your story, it's up to you.

I tend not to discuss my kids and family, except for the occasional reference. Even then I use pseudonyms to maintain their privacy. I also don't mention the names of my medical professionals.  One conscious decision I made early on was not to offer medical advice. It's one I've stuck to, and would strongly recommend to others. I may discuss my experience with a medication, but I would never suggest it to others as we all tend to react differently to pharmaceuticals. Any medical decisions need to be discussed and made with the medical professional most experienced with your case, not a woman in plaid pjs and a tie-dyed t-shirt with a huge chunk of Great Dane spit stuck to her foot.

Blogging should be fun. It should be cathartic. It shouldn't be a chore. There have been times where I've stepped back for a few weeks. The reality is that I am ill. At times my symptoms go into overdrive, or simply dealing with it all becomes too much. I don't beat myself up about not blogging during these times and neither should you. There are many guides around about how often you should blog and when.    They are great if you want to systematically build a readership, or develop your blog as a product or business. But if like many people, myself included, you simply want to tell your story, or raise a bit of awareness, you don't need to religiously adhere to these guides. We have enough going on without adding to the burden.

The best and most rewarding part of starting a blog is the community. Finding that one person who says, "I thought I was the only one!" The support and friendship you discover from all over the globe is both surprising and priceless. You discover that we share a common humanity that outstrips any geographic, language, social or economic differences. When I first started this blog I thought people would think I was a complete nutter.  Instead, what I found was a lot of people who are going through the same experiences, and equally felt alone and crazy.  I found people who were there to laugh and cry with me. To hold me up when I couldn't stand anymore, and who in turn I've stood beside during the hard times. People who also find farts and Monty Python funny. And that Dorothy shoes are the key to happiness for many. And a strange bunch who, according to my Google Search results, are curious if "Don Johnson smells cat urine" and want to see "Gnomes with big boobs". Whatever floats your boat I guess. 

If you want to raise awareness for your illness a blog is a great vehicle.  I know via this little blog and others like it, there are now many more people around the world who have heard of Dysautonomia.  Perhaps even more importantly they know what it's like to live with illness, the good, the bad and the downright ugly.  Telling your personal story, gives a clearer picture of an illness, than a sheet of facts ever can.   

So who's going to take the plunge and reclaim their voice?

For those who already blog. What's the best part for you and what would you say to encourage others to enter the blogosphere?

Michelle :)
Lets get this party started.
Pink - Get The Party Started by sayit


  1. Nice! You are so right. I also think it's a great way for people to answers questions about you maybe they are to embarrassed to ask. It's also a way to get your feeling on a subject out there without telling everyone one at a time.

  2. Dara - so true. I love the conversation aspect of the blog. You can develop friendships all over the world. Just think without social media we would never have met and laughed at our toilet antics.

    Plus, the not having to tell everyone individually is a bonus.

  3. Such a great post - luuuuuuv it! You said it all sister.

    Although I love when people comment or tweet or send me congrulatory cash (okay, never happened) I have come to realise that yes I blog for me - it is a creative outlet, it is as you say cathartic, and it is something that feels truly mine, like my space, and it is such a great community I am discovering all the time.

    Great post!

  4. Thanks Brahm - there are so many great aspects to blogging. The catharsis is in my top 5 parts. Writing something that others will see forces you to really examine your beliefs and emotions on whatever the topic may be. I often feel like once I push publish I can dump whatever it is and move on. And the community is amazing. I love finding gems like your blog (from memory it was through Mary Mac's blog, gosh that's a while ago now).

  5. I think you hit the nail on the head when you said it give a person with a chronic illness a voice. Blogging has definitely helped me find my voice since I got sick last year. I also want to thank you for putting yourself out there, and for sharing your story. I always look forward to your posts.


  6. You brought up so many excellent points that I'd have to write a blog just to comment on all of them! LOL Blogging is also helping me find my voice. It is such a great tool for our emotional health, social support, and bringing awareness to others. Keep on blogging!


  7. Katie - thanks Katie. I think the voice aspect is so important with chronic illness of any sort. often it feels like we are less in some way for being sick. You get criticised or empty platitudes when you try to speak and after a while it's tempting to retreat and say nothing. It's so important to find that voice again and know that it's okay to speak your mind. Illness isn't pretty, not mentioning it doesn't make that ugly aspect disappear.

  8. Shari - thanks babe. Breaking through the silence and finding your voice again can make the world of difference to the way you cope. :)

  9. A lot of times I blog about specific doctor's visits or procedures so I don't have to explain it to everyone I know over and over again. But I blog for people I've never met, too. But mostly, I blog for me.

  10. I really love your wit. I totally agree with everything you've said. Great advice, too. I was terrified when I first started blogging of getting stalked and I don't really like the fact that anyone can search my name and pretty much find out more than my facebook friends know about me but on the other hand, I put myself out there and although there are times when I freak out about my blog being so public, I feel it's important to put a face to the pain. I've had so many honest and heartfelt emails from people simply because I've been brave enough to be honest and open about my struggles. It does worry me that there are weirdos reading my blog, but the many people that benefit from it far outweigh the negative. Blogging is by far the best thing that I have ever done and it's way cheaper than therapy! And the best part about it is the amazing people you get to know.

  11. how do i love thee & thou's post? sofa king much.

  12. Rachel - the one stop explanation is great as sometimes you do get tired of rehashing it a bazillion times. I think like many things in life most of us blog for multiple reasons. That's what makes it interesting.

    Miss CC - There are some really amazing people out there and I know without my blog I would never have met them. Sometimes those private emails make it all worth it. The one thing I've found is that people don't have to have the exact same disorder/issue as you, but there is always something you can relate too. That old saying about being kind to people because everyone is fighting a battle is so true.

  13. I think there is something therapeutic for me blogging. I only started a couple of weeks ago, but it has become quite important for me already. A big reason for me starting was because few people have heard of trigeminal neuralgia. It's easy to look up a medical page on the internet to find out, but a personal story about how much it affects every day life is much different.

  14. Liz - I agree, the personal day-to-day effect of living with an illness can be far more informative than a fact sheet on a medical site. Go on you for raising awareness of TN. I know from back in my working days how debilitating it can be to live with that level of chronic pain and everything else that comes with it. Welcome to blogland :)

  15. Love this - great post! I also have POTs and it sucks big time!


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