I got an email this week that made me think that perhaps I should make clear my reasons for blogging.
I started the blog partly -- perhaps even mostly -- as a way to keep family and close friends updated about my mystery illness. Before I started the blog, I would send out mass emails updating those who wanted them on what was going on for me: symptoms, medical tests, doctor appointments, etc. Honestly? I never thought that someone I didn't know in real life would ever read my blog more than in passing.
Around the same time, I found Laurie Edward's blog, A Chronic Dose, and realized that I was far from alone; that there were other people out there dealing with chronic illnesses and finding ways to cope. That was my introduction into the chronic illness community on the blogosphere and the Internet in general. I quickly began reading other people's blogs, making connections, leaving comments, trying to both find and give support to others in similar straits.
My blog became a place for me to vent, to share my personal struggles with chronic illness with the void that is the Internet. I feel blessed by many of the people who have reached out to offer me support, and I hope the support I have tried to offer in return has given them some comfort too. I personally find comfort in knowing that I'm not the only one confused and struggling with it all, trying to adapt to new limitations from this mystery illness that shift and change like the wind. And I know I've found some amount of validation, I guess, in learning in the similar experiences others go through whether they have similar illnesses to mine or not. It helps a great deal with the sense of isolation I struggled with early in my illness. (My isolation hasn't changed much, but my acceptance and comfort level with it has. My world has shrunk, and in some ways that makes life easier because I rarely struggle anymore with trying to be my pre-illness self. I guess I'm not sure if that's acceptance or simply that I've given up. I prefer to see it as acceptance.)
My blog, more than anything else, is a place for me to express my emotions and my feelings. It has taken the place of my paper journals that I've kept on and off since I got my first diary as a ninth birthday gift from my brother and sister. Do I whine about my aches and pains here? You bet. Where else can I express how cruddy I feel, other than my blog? In "real life," I rarely burden people (other than my incredibly supportive husband) with the details of how I'm feeling. I know full well that when someone asks how I'm doing, they don't really want the answer. So depending on how much they know of my situation, I either say, "Fine, thanks! And you?" or something along the lines of "I've had better days," and then change the subject quickly.
I'm not a stoic person. What seems like a million years ago, in the mid-90s, I got sent to a pain clinic after my first shoulder surgery didn't miraculously fix an on-the-job injury. It was a workers comp claim, and the pain clinic catered to workers comp programs and insurance companies. In other words, they weren't really trying to address my problem; they just wanted to clear me to go back to work full-time so Labor & Industries could close my claim. At the end of my month at the pain clinic -- where I'm still not sure if the physical therapist was kidding or not when he said the goal of the program was to increase our pain so dramatically while we were there that we felt better when we stopped coming and therefore settled our claims faster -- I had an exit interview with the two psychologists and my then-boyfriend/now-husband was asked to be present. Turns out, the session was more for telling him how to deal with me than for me.
As I listened to them telling him not to offer me comfort when I expressed or acted like I was in pain, to withdraw and ignore me, and reward me with his attention and company only when I acted like I was pain-free, I was flabbergasted. I interrupted to tell them (and Scott) that if he followed their advice, it would likely be the end of our relationship. For me, expressing my pain somehow makes me feel better, both physically and emotionally. If I hold it all inside, I simply end up making myself sick in other ways. (FWIW, it turned out the first surgeon had somewhat botched the job. A second shoulder surgery two years later had much better results, but I still ended up being declared permanently partially disabled by the state of Washington in 1999.)
And I don't think I'm entirely alone. A British study recently showed that swearing has a pain-killing effect. I think talking about the pain one is feeling, whether physical or emotional, also helps lower pain levels. I think that's why support groups are so helpful for many people.
My blog is an outlet for me, and yes, I'm probably going to whine about the places and ways that I hurt, both physically and emotionally. And OK, going by past performance, "probably" is a blatant understatement. :-) I'm grateful for those of you who read my blog (especially those who aren't related to me! :-), and even more grateful for those of you who take the time to comment, either on the blog or via email. I've learned a lot from folks who have commented over the past couple years, and I don't have words for how much I appreciate the support I've received.
But you know what? I'd be writing here even if no one was reading. Because it helps me. And if reading my blog helps someone else figure out their journey through a mystery illness of their own, I'm thrilled. If it makes them feel less isolated and like they're the only one going through something like this, that's wonderful.
But it's not why I'm here. I'm selfish. I'm self-centered. My universe revolves around me and my family. (I firmly believe that's true for everyone, although I'm sure some will disagree.) And as a writerly quirk, I often need to put things in writing to work through them. I don't always know how I feel about something until I've written about it; I process things through my fingertips at a keyboard, often having no idea what I'm going to write until I see it on my monitor. (Hm, that's a telling fact about me that I'm sure some of you will tease me about.) I was like that as a reporter too; I was often surprised by how my stories turned out. The best ones, it often seemed, really did write themselves.
For those who are curious, the email that prompted this post:
"My mom passed away on July 27 and I see on that day you complain about every ache and pain. I too have those days but geez........you are a complainer and I am sure the doctors just cringe when they see you on their books. You are wasting their time with all of these expensive procedures. And we wonder why health care is so expensive. Give it a rest."
"My condolences on the loss of your mother. You must be going through a hard time right now. As for the rest, well, I consider my blog a place for me to vent. I think everyone needs an outlet for venting, and that's where I do mine since I figure no one is obligated to read it and "hear" my whining if they don't want to. I don't burden people with it in person, so the blog is where I let it out.
If you find my writing annoying, well, I recommend you stop reading it."
And apparently she took my advice because I got a notification that she unsubscribed to my blog today.
Meanwhile, many thanks to those who continue to stick with me.
Extreme Fatigue - Exhaustion. Fatigue. Lethargy. Weariness. It's so much more than just being tired... And it hasn't been this bad in a very long time... it's so intens...
3 months ago