Thursday, February 19, 2009

Authenticity And Truth-Telling In Chronic Illness Blogging

While I had promised myself that I would stop reading patient narratives for awhile and try and tackle some “lighter” reading in my spare time, I haven’t been so successful. I’ve recently finished reading:

“Against Medical Advice” by James Patterson and Hal Friedman, “Turning White” by Lee Thomas, and “Unexpected Blessings” by Roxanne Black. (For more information see,, and, respectively).

A surprising commonality in all of these stories of illness is how the author’s decide to tell the(ir) stories. It isn’t only that the stories are each written in their own unique style. It’s that the very act of telling ones story is centrally important to the chronicle provided by the book.

All of these books are written very differently. “Against Medical Advice” is a book about a boy that has Tourette’s syndrome and severe Obsessive-Compulsive Disorder, and the triumphs and tragedies that occur in his life and the life of his family over many years of struggle.

“Turning White” is by Lee Thomas, a reporter for one of the local Detroit TV stations. He has vitiligo – the same autoimmune disease that Michael Jackson has – which causes an erasure of skin pigment. He tells the story of what it has been like to have such a visible disease and be in the public eye. He has not always been open about his illness, and continues to wear makeup on the air when reporting so that he won’t detract from the stories he is reporting on.

“Unexpected Blessings” is by and about a woman who has lupus, and who has done amazing advocacy work for people with all types of chronic illnesses. After enduring two kidney transplants, her story is still one of hope.

Reading all of these books, I laughed and cried. Despite their different stories, it was again reinforced to me the similarities in chronic illness experience, even when the diseases vary so greatly; a profound lack of control dominates.

The reality is that all of these books chronicle tales that, at least at some point in their telling, are pretty unbelievable. I don’t mean that I didn’t believe what I was reading, but there are such extreme situations that many chronic illness patients have had to endure. Taken together, it seems like these three people have experienced all the possible health issues that a person could ever imagine.


I know that our situations are relative to ourselves. Lee Thomas mentioned in his book that he shouldn’t take his illness so seriously because unlike other chronically ill people he has met, his disease isn’t fatal. While that might be true, the one thing that I really resent is when chronic illness blogging becomes a competition. And what happens when someone does blow something out of proportion to the point of it being insulting (especially if they aren’t chronically ill)?

For example, a non-chronically ill friend blogged about arm pain, only to make an unnecessary insinuation about the impossibility of having arthritis in ones 20s. I’m not trying to downplay this person’s pain. But I do resent the fact that they can’t imagine that there are people living among them who might actually be dealing with an actual health crisis (because they are too obsessed with their own lives to look around them and actually get to know other people’s stories).

Why is it that every healthy Tom, Dick, or Harry amongst us feels no shame shouting it from the rooftops when they have a minor ache, pain, or cold, but the chronically ill among us only complain to each other. We worry that we will be seen as complainers, over-dramatizing our issues; that people will come to only see us for our illnesses. But isn’t that the way things are already? Either that, or they don’t see us at all.

The point of this story was to show that there are people out there who can’t imagine going through the things that we blog about. Heck we know, live, and breathe next to those people. So it isn’t all that shocking to wonder about how people think we are portraying ourselves and our stories.

Several people have made the comment to me: “27 vials of blood? Really?” I know, it’s pretty unbelievable, huh? If it hadn’t really happened to me, I never would have believed it myself. It does make me sad, though, to think that there are people that would doubt some of these details (or take advantage of the vulnerabilities that come with them). This experience has been harrowing enough. I could never imagine making things sound scarier than they actually are.


I guess this post has sort of strayed from its intended target, which was truth telling. But my need to find myself makes me realize that I am more constructing the story as I go, rather than reporting on a story that has already happened. (After all, that is the great thing about blogging, right? Everything is happening in real time.) Truth be told, several recent posts have not been posted immediately. I have had to wait until the time felt right for me and I was further removed from the original events.

There seems to be a fine line between the truth and stories for the sake of telling stories. This post is in no way supposed to offend anyone. It is just meant to make us think about what stories get told, and which stories stretch the truth.

To me, honesty is the best policy and I pride myself on being open and honest with my readers. As a blogger, there is no better feeling than someone telling me that my blog has resonated with them (especially if they don’t share my illnesses). It would be horrible for people to commiserate and then later find out, Surprise! None of this is true.

The fact that this experience can have a positive spin (hopefully helping others) is something I am incredibly grateful for. I think we all have a flare for the dramatic (some of us also have flares for other things; bad pun, I know), and I usually try and admit when I know I’m writing at a time when I am particularly emotional about something and that I will probably look back later and see the situation differently. This doesn’t mean, though, that I’m trying to inflate the story for the sake of garnering attention. It just means that, that is my interpretation of my story.

I think we all start out blogging with altruistic motives. But at what point does it go too far in the other direction? Believe me, I’m guilty of these things, too. It’s just sometimes I have to wonder…

I’m working on writing a memoir and I’ve been working on an anthology. The one thing that I’m not satisfied with in the draft of the anthology is my own story. It feels very bland and detail oriented. The quality of writing just isn’t there. The verbal prowess of my blog just doesn’t carry over. All that aside, though, the real question is what the story is about. What parts of my story do I pick to tell? Where does it begin and end? What kind of persona do I want to give myself? Which people in my life do I want to include?

These are, or should be, the same questions we ask ourselves about what stories we publish on our blogs.
(Black, Roxanne. Unexpected Blessings. New York: Avery, 2008.)

(Patterson, James, and Hal Friedman. Against Medical Advice. New York: Little, Brown, and Co., 2008.)

(Thomas, Lee. Turning White. Troy: Momentum Books, 2007.)


  1. At my last job, one of the guys on my team was a horrible, complaining malingerer. Drove me C-R-A-Z-Y.

    I started going downhill health-wise pretty seriously a few months after he started working on my team. Not only does he have an extremely low tolerance for pain, but he complains about Every. Little. Thing. It got to the point where I had to physically leave my desk when he started complaining about his latest medical ailment.

    I remember one day at work I was trying to describe to another girl what it felt like to be sick with headaches, dizziness and nausea all the time. (She's never had a headache in her life.) I made the mistake of comparing it to a really severe hangover (because I know she's had her share of those). The next day, I hear Mr Malingerer comparing his minor headaches to a hangover. I wanted to punch him. I was really very upset that he would dare to compare his complaints to my serious, uncurable disease.

    It's an interesting dynamic: the actually sick chronically ill who desperately try to hide their diseases and the hardly sick healthy who complain and malinger and look for attention. Maybe the problem is that we don't whine enough - maybe whining is what keeps them from getting chronic illnesses. ;)

    Great post, as always, Leslie.

    Be well,

  2. MJ,

    It's great to know that I'm not the only one who feels like this. I'm glad you liked the post!


  3. Good post! I've blogged about my lack of tolerance for the "illness as competition" issue before--no one has the market on suffering, is how I see it.

    I've also struggled with balance and story telling and how much to include about other people--I never want my writing to devolve into just listing my symptoms; there's nothing to take way from that. But, I'm also worried about revealing too many details that aren't mine to give. For a very public medium, still much remains private. It's a work in progress, really.

    Now I think I am moving off target, but let me end with saying, I can totally relate to what you're saying.

  4. Great post. You raise many interesting points about misery competition and honesty.

    I think it's important to consider the source. I have found that friends who complain to me about an incident of injury or illness are actually trying to find a way to connect to my experience of chronic pain.

    With others - I just try to ignore them.

  5. Thanks Laurie and Barbara for your comments. I'm glad to know that others can relate to this issue.

  6. As always you give me much food for thought and some interesting book recommendations to boot!

    I too have gone through how to deal with friends who liken their sport injury or sore shoulder to what I go through on a daily basis. I try to remember that if you don't suffer from a chronic illness is tough to understand, but my patience wears thin at times too.

    Laurie makes a valid point about the very public medium in which we write. I try hard not to just list symptoms and complain, but I think we need the honesty you provide in your posting. A balanced perspective is always best, and not all days are rosy or all questions answered.