Monday, July 16, 2012

The Personal is Political

Several months ago, a nonprofit guru advised me to stop posting personal things on this blog.  I've taken that advice.  But sometimes the line between personal and political is fuzzy.

As you know, on May 20, when US Airways wouldn't let me take a change of clothing and personal hygiene items on a flight, another passenger said "maybe you shouldn't travel."  Sick people just shouldn't travel.

Last week, someone wrote in a memo that "unfortunate people," i.e., people with higher utilization needs -- sick people who need more health care services -- should be left on their own.  If they need better insurance than the norm, they should buy it.  If they need services not provided by insurance, they should pay for them out of their pockets. That's me.  "Unfortunate."

Today, a woman was angry at me because I could not find her a new apartment in Michigan.  Although I referred her to the local public housing authority, what she wanted was for me to tell her where to move.  In other words, she wanted me to be her real estate agent -- from half way across the country.

Most days, fewer than 50 people read this blog, according to Google analytics.  There are special days, like the day the health reform decision came down, when several hundred people tuned in.  But most days, it's not clear that waking up at 4 am to get this blog written before everybody wakes up matters very much.

So at least for today, this is my blog post.  I am exhausted.  I am hurt.  I am unhappy.  And I have to go to Denver on Friday and I don't know how I'm going to do it.  So excuse me for being personal, but I just don't have it in me to share today.  Hopefully, tomorrow will be better.  Jennifer


  1. I appriciate your blogging and I would also understand if you chose to devote the energy from blogging elsewhere. I wish more folks knew about all the good works you do.

  2. I am sad to read the above post. You express very concisely one of the many reasons chronic illness is so hard and isolating. Despite simply wanting to live you are looked at suspiciously, either because they can't see your illness, the extra work you represent to them or most of all the fear illicited, like they are going to catch your illness like the cooties. The decision to keep or nix the blog should depend only on what will be best for you. You could even condense it to biweekly if that gives you more space. I do believe that every day is a new chance and although the transition may be hard, if you know for sure that you need to do something different you must. Seize the power you do have. Xo

  3. Just until I'm feeling better. I enjoy blogging and will come back to it, for sure. J

  4. Jennifer. I very much apprecaite your blog and find it very kind of you to share your personal stories to show us all how illness affects those with chronic illnesses. It's an everyday issue for many and you bring it to reality and life and inspire us to do more and better, if nothing else, in raising awareness of this issue. A huge THANK YOU for being our passionate advocate and spokesperson. We would not have the recognition we have if you weren't doing this. So, take a very well deserved break, rest up, get your energy back, get well and please don't leave us. My best to you.

  5. No worries. Just a day or two off is all. Thank you all for your kind words. They help a lot today. J

  6. Jennifer, Google analytics doesn't necessarily track readership via RSS feeds, including Google's own RSS reader which many blog followers utilize. Having said this, I will say that your posts do get read but the tracking may not count us! I find the personal content relevant because it indicates that you have an understanding of where all people with chronic illnesses deal with, whether that is autoimmune type 1 diabetes (like myself), MS, IBD or something else. My mother lived with UC (Ulcerative Colitis) until having J-Pouch surgery a few years ago, which is not an option for Crohn's but the experience is similar. In any event, I hope you are feeling better soon. Chronic illnesses of all types aren't always as they seem to outsiders!

  7. It's unbelievable what people with a chronic illness have to suffer on top of being ill. I've been by my young son's side (with severe Crohns) while we endured all kinds of crazy assumptions, and not only from the general public, but from even the medical community who should know much better.
    I used to be such a nice person, and I still think I am most of the time. I have realized, however, these days I am surprisingly quick to snap when things get too ridiculous. I am not very proud of myself when I do but usually the crap stops there.
    I hope you are feeling better soon Jennifer.

  8. Jennifer,
    I follow your blog closely and appreciate your excellent analysis. I am not aware of anyone who provides the commentary and analysis that you do. Most people don't even realize the problems that you describe exist, until it's them facing the problems and it's too late. I used to be one of those people, until circumstances brought me face to face with $200k in denied medical claims. That fight was one of the worst experiences of my life. Thank you for all that you do.

  9. Jean Mills AranhaJuly 16, 2012 at 3:32 PM

    Jennifer, I just want to echo what the other posters are saying. I think you provide a wonderful service, and your personal stories are most appropriate, in my opinion. After my husband had his first stroke in 2010, and I had to navigate the health care system for him, I could appreciate even more what people with chronic illnesses go through. As others have said, please take whatever time you need to rest, and post when you can. Your own health and peace of mind are more important than getting us a blog post each and every day. I would hate to see it go away completely and forever, though. Peace, Jean

  10. Thanks so much, Jean. I'll be back -- probably tomorrow. J

  11. Hey Jennifer, I don't know if you remember me, but you SAVED MY LIFE by appealing and winning against United Health Care Insurance for my gastric pacemaker. I will be forever grateful to you! I am one of the many that read your posts everyday. I completely agree with the others...your health (as you already know) if by far more important than posting everyday. So, please put yourself first and take some time off. Karen

  12. I used to be an active blogger. At times, thousands of people would read my columns, and at times nobody would. It's the same with a newspaper column when you really think about it. The New York Times may have a distribution of 5 million, but how many people are really going to read a column on page A19, when they could get distracted by all the coupons first?

    Blogging can be good if you're just looking to make a point. It can be a way to work through ideas.

    It can also be needlessly stressful and poor for your health (why I stopped blogging years ago).

    I currently work at a small nonprofit. Every once in a while we get pressure to establish a blog. I don't really see the point. 15 people would read it and the only time it'd ever get read is if staff messed up and said somethng too controversial.

    Blog if you want. Don't if you don't want. It might help at the margins. Who knows. Maybe John Roberts was one of your readers!