There’s an interesting meme going around Facebook and blogs right now: 30 Things About My Invisible Illness You May Not Know. With Invisible Illness Week quickly approaching, the questions posed are particularly resonant.
I’ve thought a lot about how I’d answer the questions. For some, I had immediate replies, like “Something I never thought I could do with my illness that I did was __” (live abroad for a year) and “The hardest part about mornings are __” (trying to be awake and, you know, pleasant for early morning chest PT). But several of them touched on things that my experiences don’t speak to in the same way; namely, the “before” and “after” of illness onset, or, most notably, “If I could have one day of feeling normal again I would__.”
Like many lifelong patients, this is my normal. I cannot long for what I cannot imagine. But the question of which is better, to have known healthy before getting sick or to have never known healthy—a question that comes up fairly often—actually hints at something deeper than these static boundaries. This is my normal, this is the life I created from the circumstances in which I found myself and I would not trade what I have created for a taste of a different meaning of normal.
Though I’m not going to complete the whole meme here, I think it can be incredibly useful, and not just for people adjusting to sudden or adult-onset chronic illness. As I read people’s replies about what nice/surprising things others have done for them, it hit me how much of that is my normal, too. I’ve always been sick, I’ve always been surrounded by friends and family, so I have, quite literally, grown up having people respond to me with compassion, loyalty, and empathy.
In fact, the hospital visits, cards, phone calls, Fed-Ex’ed mix CDs, etc and the intrinsic knowing that there are people who will come in the middle of the night if they are ever asked form such an enormous debt of gratitude I feel no amount of similar deeds I do for others can ever repay it.
(Of course there have been moments of the opposite, and friendships that didn’t survive this, but like the careless comments, insensitive assumptions, or completely inane expectations I’ve received, they are exceptions, not the norm. Er, normal. Not trying to pun here.)
I’m not saying I haven’t had adjustments to make, or new realities to forge. I didn’t get correctly diagnosed with some of my more serious problems until I was an adult, and my treatments changed significantly. And like most patients with chronic illness, my health status fluctuates frequently and drastically, so life is a constant cycle of readjustment.
After mulling this over for a few days, though, I think the more striking “before” and “after” I can point to is that between illness being public or private. For twenty-three years I was sick and while it seeped into everything I did and every decision I made, it wasn’t something I talked about outside of family, friends, teachers, and of course, doctors. I’ve had some sort of a byline since I was 14, but the only piece of “public” writing that concerned illness was my college essay, and that was mainly because I felt I should probably explain why I missed the better part of two years of high school. You know, minor details.
And then, as the story goes, I found myself in a nonfiction course in my MFA program with a looming deadline and I didn’t know what else to write about, so I wrote about life in the hospital and suddenly, eleven other people knew more about my thoughts and emotions during medical crises than most people in my life did.
Weird.
A few years, a few hundred blog posts, one book and another in the works, and many, many exchanges with other writers, bloggers, and patients later, here I am. And as much as I work to update and refine my reality based on the color of my lung secretions, how much air I can breathe in, or what other random infection or problem that springs up, I find the balance between private and public just as important and just as complicated.
I strive for the universals of modern chronic illness but know those depend on particulars. After all, all writing must tell a good story, and that story comes in the details. I embrace the conversations and explorations a more public illness experience allows for, and I appreciate the irony that people who read what I write are sometimes more in tune with what’s going on than people I know—it’s a macro version of that first workshop experience I had as an MFA student.
But for all the stuff that happens offline, the daily minutiae and the more serious decisions and reactions that are part of my normal that do not make their way into my posts, I am equally grateful for the private experience of illness.
And so to return to the meme, let’s look at #26: “When someone is diagnosed I’d like to tell them__.” Based on this post, I’d tell them of the value of online communities and social media, of how interesting and affirming it can be to read other people’s experiences and see traces of your own story in them. I’d tell them to connect, to leave comments on blogs, to know no one has all the answers but you should always be open to learning from others’ perspectives.
And I’d tell them that the best-case scenario is to also have someone you can call when you are crying and need someone to hear the tears, or when you have good news that the people who have traveled this long road with you offline can appreciate the most.
Just found your blog. This was a great post. I’m struggling myself with the private/public balance right now, as I’ve launched a new blog but continue to keep my real name private.
Laurie,
This post really resonated with me. I think you highlight something really important. While much of the chronic illness experience can be a lonely, solitary, and private pursuit, it is also so much about the personal connections that we make with others. As you suggest, this is not always positive (insensitive comments, relationships that don’t survive, etc.), but having peop;e there for you says, and does, a lot. Thanks for another thought-provoking post!
Leslie
Beautifully stated and well thought out, you make so many important points that I find myself wanting to write an essay of a comment (but I won’t!!)
I am envious that you have seem to have such a wonderful support system, because my experience (largely) hasn’t been terrific with people in the offline world. I find that most people have good intentions, but they tend to fade away when they start to realize that my normal is so often sick, almost as if they either can’t believe it is true, or they are afraid that being a part of it will somehow cause them to face that life is unpredictable and this could be them.
Thanks, as always, for your wonderful perspective. I truly believe that we learn more by struggling through our illnesses than if we lived a “normal” existence, and your writing is a powerful example of the good that can come from adversity!
Thanks for a wonderful post, Laurie. Like you, I can’t divide my life into “before illness” and “after illness.” This has been my normal since I was 2 years old, and I wouldn’t change it for anything.
I appreciate the feedback, guys. The public/private balance is a tricky one, for sure. Some things I am perfectly comfortable putting out there, but in other areas, not so much, mainly because this is not an anonymous blog.
Maureen, I totally hear you, and it frustrates me that your experiences are all too common…I really do think many just see illness as acute, and can’t deal with those that don’t go away after a few weeks.
I know I am lucky, and I think growing up in a family with many serious (life-threatening) illnesses has something to do with it. Before I was even born, my family knew what it was like to live with illness; it was their “normal.” When it came time for me to vent, or be angry, etc, they could understand my feelings so well.
Sometimes people not knowing is the hardest thing of all.
I’m happy to say i’ve just now found your blog. You should get a copy of the meme and I would do it for my own blog. Although, On my own blog i’m pretty out there with the can’s and can not do’s and how it effects my daily life. I also talk about a LOT of other stuff but suffice, I dont’ hid my lupus anymore. Screw em, if they can’t be supportive, move over for someone who can be of assistance to me.
Leslie is right, it’s about the relationship we can make that make a difference in our lives.
When I first started blogging, and occasionally since then, I’ve gotten emails from someone I consider a mentor who really helped launch my career in journalism. But he’s a bit old school and still doesn’t really trust this Internet thing. He keeps warning me that my blog will come back to bite me when I’m healthier and start looking for a job. And he might be right … but while there are still things I don’t post about (because hey, my parents and inlaws and siblings, etc. all read it!), for the most part I think the current benefits of having this outlet far outweigh the possible future drawbacks.
I like living out loud, or at least in print. 🙂 And I feel so much healthier emotionally since I started blogging and opening up about more than the just-the-facts-ma’am updates on tests and doctor visits.
And of course I’m grateful you chose to share (some of) your experiences too since I consider you my introduction into the Internet’s chronic illness community that has been such a huge support system for me.
Great post. I used to be the one who didn’t even tell friends and non-immediate family members, and I think blogging, among other things, helped me realize it’s OK to talk about it. Like Britta said, “Sometimes people not knowing is the hardest thing of all.” I found out how much support I do have by being able to talk to my friends about it. As for blogging, I don’t want sympathy, I just need to get it out sometimes. And let me tell you, the emails I get saying “I’m going through ____ and your blog just gave me hope,” keep me from getting to shy to do it anymore. I have people who read my blog that I know and see all the time, who are friends and live out of state, and complete strangers who every now and then will send that email or even do it in a comment. As long as I can help someone along the road a little, I’m not shying away from being raw and real, every post.
Your posts are very well researched and interesting. Would you be interested in more publicity and exposure on my blog http://www.naturalmigrainesolution.com/news?
Visit my profile, I need writers like you who are interested in submitting to a newsletter and getting their voice out there.
Thanks Laurie.
Susanne Miller