Wednesday, April 6, 2011

Writing About My Disease: Is it really just about the disease?

The reasons for why I write/blog about my life, my health, and my diseases have changed over the years.  In fact, I contemplated the question “Why My Blog?” over three years ago in January 2008, collecting my blogging story up to that point.  It was my 86th post out of almost a 1000 now.  I had just started the Carnival of MS Bloggers and had not yet discussed some of the more personal aspects of living with MS and RA.

Here’s an excerpt from the end of that post:
"How will this blog make a difference?"

For this, I don't really have a good answer yet. I didn't start out with lofty goals of being a patient-educator or a patient-advocate. I'm not an owner of a healthcare consultant company or a political pundit. Nobody is paying me to blog, conduct research, or discuss issues surrounding healthcare or multiple sclerosis. My background is in education but I have never been much of an activist, always preferring to stay in the background. I do enjoy interaction, love comments and increased traffic, and hope to be able to use my growing expertise to help in some humble way.
Later that year, in July 2008, I was hired by HealthCentral to write for their MS website.  So I began “blogging” for them for pay, but kept that completely separate from my own personal blog.  I was glad to be joining a team of MS writers and work on a website where the focus was not on using a single person around which to build a community.  It was also a good place to start talking more about my disease and less about health policy.

Unfortunately I didn’t understand much about how to build a following of my own or how to promote my work.  Looking back, I wish that I had understood the importance of responding to each and every comment (here and there), as that is one way to keep the conversation on your own website and to raise your profile.  By the way, I still love getting comments.

So what does this have to do with why I write about my health?

Nowadays I am considered a health activist.  I also consider myself a patient advocate and somewhat of an educator.  I wish to see the MS blogging community remain an active and vibrant force on the internet.  I feel that it’s important to promote other people’s material and websites, so I continue to do so.

I write about my health which encourages others to do the same.  Together we help to spread awareness and understanding of what it takes to live with illness.  We provide a resource for those who are searching for answers to questions or validation of their own experiences.  Together we are powerful.
On an interesting side note, just recently my blog had the most visitors in one day ever.  On March 14, 2011, there were 545 visits to Brass and Ivory with 971 page views.  It’s not the thousands of visits per day that some of my Diabetes Blogger friends get, but it was exciting nonetheless. What was so special on that one day?  As the first day of MS Awareness Week, the National MS Society linked to my blog from their website and their Facebook page.  It was only one mention, but that little link was obviously powerful.  (The 2nd highest visitor day was the day that Marc of Wheelchair Kamikaze mentioned my blog in a post.  Thank you Marc.)

If you read Brass and Ivory on a regular basis, you know that I like to promote other blogs.  When I find new MS bloggers, I announce them.  There was a point in time where I would go to each one, practically read their entire blog, and leave at least a simple “welcome to the community” comment.  Seems I don’t leave that comment anymore but some of you faithful readers will.  I’m sure that many of these bloggers don’t have clue who “Lisa” is and they don’t know that they’ve been welcomed and promoted. 

I need to do better in this department, especially if I want to be seen (or my blog seen) as a true hub of the MS blogging community.  It would also be GREAT if other bloggers promoted me as well.  Google likes that sort of thing, you know, the links and stuff.  Before I changed the URL of my blog, Google thought very highly of it and it had a fairly high Page Rank for a little blog. 

But now, my blog has so many more outgoing links than incoming links that it hurts the blog’s visibility in search results.  My Page Rank is 0.  Other websites/blogs who never promote other bloggers or material, and who have experts working on their SEO, do not have this problem.  Their websites come up at the top of searches related to multiple sclerosis or rheumatoid arthritis every time.

So if you are reading this, I humbly ask that you write about Brass and Ivory and link to it.....pretty please?
So back to the business of writing. 

Basically, I am a non-writer who has become a writer.  I enjoy conducting research (most of the time) and sharing the results of what I learn with the community.  It has become a huge part of what I do and who I am, not to mention the time involved in keeping up with everybody is extensive.

Writing has become an outlet for sharing emotions as well.  I can tell you (the community) things which I might not bring up in conversation with persons around me.  I know that you will understand and be supportive.  You have become my personal support group.

Fortunately, I don’t get attacked too often about what I do here on the blog and elsewhere on the internet.  It has happened on occasion but that experience is in the minority of the wonderful interactions there have been over the years.  I aim to be honest and straight-forward always which might upset a few people (or pharmaceutical companies).  I know that you trust me and I take that trust seriously.  I’ve developed true friendships from the blogs and some of us even had lunch together just yesterday.

But is writing always about writing?

Looking back at what I have just written above, I see that a lot of what comes to the surface when I think of blogging and writing lately is less about the writing and more about ‘doing things right.’  Most of what I’ve done has been done by accident.  I didn’t have a clue when I started and I still have only half a clue now.  I’m kinda making this up as I go along folks.

I have to admit that when I read another blog (especially a prominent one) say that they don’t have the information about something, or that they conducted a search on a topic and didn’t find an answer (especially on a topic which I’ve written or documented extensively), I get frustrated.  I want to be on the radar screens of others who are also highly regarded.  I want that information to be more easily found when others conduct Google searches.  Perhaps I should be more controversial, that might get more visits to the blog or maybe more comments which would raise my visibility.  But that's not me.

My apologies if this post has turned out to be not so much about the writing of my disease.  It is a bit of a brain-dump and pseudo-rant.  However, it represents some thoughts which have been on my mind lately.  And THAT is basically what writing a blog is all about.....sharing what is on your mind!!!

#HAWMC (Health Activist Writer’s Month Challenge) Day Six

P.S. How do you like the new profile photo over there on the right?  You have to come to the blog to see it.  ;-)


  1. Love the photo and love the blog. I have to remember to promote, as you requested. I'll leave myself a note to do so tomorrow. Please keep up the writing, and I'll try to keep commenting.
    Also, besides just the MS part of the blog, I love hearing about your music lessons and your students.


  2. I came and read I already had seen the photo (nice by the way) on the twitter feed.

    Hey visitors v rank - never makes sense to me. New links to your blog provide the fastest jump up the ranking. I notice you have meta data now YEAH!

    Your blog is a great source and you personal touch sets it aside from many of the other "info" blogs.



  3. Lisa, I think you do an amazing job, not only in sharing insights about your life and the disease process but also in creating a community. Thank you.

    And I think the photo is great.


  4. Lisa,

    I really do read your blog but I admit I don't generally comment. That's kind of stupid on my part because I end up with nearly no comments on my own blog, which can be depressing sometimes, can't it?

    While I do have a link to you on the side of my blog, since I can't get a handle on how many visits I actually get, I can't prove I do you any good at all; but hey, if just one person tells their friends about us, then they tell their friends and so on an so on..

    I remain a charter member of your fan club,


  5. through your blog i have gained friends, support, information, comfort, a sense of belonging, compassion... just to name a few...

    you see, you have done such a wonderful job here pulling us all together, encouraging us all with your words... amazing job woman!!

  6. Nicole,
    You may not actually realized this but you started my blogging journey! I remember asking you, "How do you join the community? Is there somewhere to sign or something? Do you remember that? LOL Well, I'll be the first to tell you that I'm simply following your lead. And I too LOVE comments. Unfortunately, I find myself often lobbying for them. I judge myself by them! The other day I said, "Okay , Nicole this is getting out of hand." Get it together.


  7. Hi Lisa,

    Thanks for continuing to promote blogging about our health issues. I agree, we need to all become patient advocates and keep the online community vibrant. Please check us out at:


  8. I've been here reading all your blog entries since the day I found you! I will make a point of leaving a comment, and link your page where I can!