I was recently asked to answer a survey whose participants were health bloggers. It included several interesting questions about how I felt about my disease process. I had to answer questions by selecting answers which ranged from strongly disagree to strongly agree. You know those kind of surveys. While attempting to answer the questions in the most honest way possible, I was faced with the task of acknowledging the realities of the changes that accompany living with autoimmune disease. And I really, really didn't want to.
For those of us dealing day to day with autoimmune disease, there is no avoiding a few realities. Ah, yes. Those cold hard facts that for me are things best tucked away in some obscure part of my brain. My least favorite of these nuggets is the fact that Sjogren's syndrome is completely incurable. Runner up? Knowing that Sjogren's syndrome is progressive. Even though I'd rather forget those tidbits, I couldn't ignore them as I looked at the long list of questions.
Generally, the questions were worded something like this: I feel that I have control over my health. Strongly agree? Or strongly disagree? Or something in-between?
Well, now. Hm.
I am confident that I can improve my health in the long run.
Er.
My disease has impacted my ability to work.
Well, duh.
Not surprisingly, after a lengthy series of questions similar to the ones above, the queries took a different focus:
In the last six weeks, I feel helpless. Strongly agree? Strongly disagree?
I feel isolated and lonely.
I feel generally hopeful about my future.
I haven't thought about defining my feelings about being chronically ill so clearly for a long time. Which is strange since I write about it every day. But - I think that my post subjects are focused in a different direction. I try to write about living in the present. Period. And, as an aside, I'm living with autoimmune disease. I would really rather not discuss or ruminate over my lack of control over my poorly behaving white blood cells and auto antibodies.
Does this mean that I'm deep in avoidance? Or denial? Hm. I'll have to let my slow brain slog through that one. This may take awhile.......
I wanted to answer as honestly as I could, so I found myself giving answers about the control of my future health that were less than optimistic: No. I don't think that I alone have complete control over my body, and the fact that this disease is unpredictable, ill-defined, poorly researched, and relentlessly progressive is the reason that I feel this way.
If I were blogging about other health topics, say, weight loss or fitness or nutrition, and did not have a chronic and progressive disease, I'm sure that I would have answered those questions very differently. I would have said that, yes, I do have control over my health. But in the absence of a disease which robs me of energy, endurance, and periodically impacts me severely enough to require days of severely limited activities, it's irrefutable - the potential for success in fitness, nutrition, and other similar issues would be much higher.
Answering these types of questions in such a limited format is so difficult. While I realize that my disease may progress and acknowledge uncertainty about that, I also realize that I am not completely vulnerable to any direction that autoimmune disease takes me. I do have control over what foods go into my body, how often I exercise, what medications I take, how much rest I get, which physicians I see, what kind of environments I put my body into, but most importantly - I have control over how much I know and understand about my disease.
That's a great deal of control.
I have a purpose in life. Strongly agree? Or strongly disagree? Or something in - between?
This one was pretty easy, actually. Early on, my purpose was to be a good wife, a good nurse, and a good friend. After my kids arrived, purpose number one was to be a good mom, and as long as I am a mom, that's my purpose, no matter what age my kids are.
Aside from family responsibilities, I have found a great deal of satisfaction in making information available to others dealing with my disease. This is different from making the claim that I'm an expert, or a definitive resource, which of course I'm not. All I can do is find legitimate sources of information and put them out there in the blogosphere along with my own personal experiences.
It was an interesting exercise, an opportunity to step back and make an assessment of The Life and Times of Julia the Sjoggie. However, enough introspection. Whew. It's hard work delving deep into a psyche as bonkers as mine.
We now return you to our regular broadcast schedule.
Generally, the questions were worded something like this: I feel that I have control over my health. Strongly agree? Or strongly disagree? Or something in-between?
Well, now. Hm.
I am confident that I can improve my health in the long run.
Er.
My disease has impacted my ability to work.
Well, duh.
Not surprisingly, after a lengthy series of questions similar to the ones above, the queries took a different focus:
In the last six weeks, I feel helpless. Strongly agree? Strongly disagree?
I feel isolated and lonely.
I feel generally hopeful about my future.
I haven't thought about defining my feelings about being chronically ill so clearly for a long time. Which is strange since I write about it every day. But - I think that my post subjects are focused in a different direction. I try to write about living in the present. Period. And, as an aside, I'm living with autoimmune disease. I would really rather not discuss or ruminate over my lack of control over my poorly behaving white blood cells and auto antibodies.
Does this mean that I'm deep in avoidance? Or denial? Hm. I'll have to let my slow brain slog through that one. This may take awhile.......
I wanted to answer as honestly as I could, so I found myself giving answers about the control of my future health that were less than optimistic: No. I don't think that I alone have complete control over my body, and the fact that this disease is unpredictable, ill-defined, poorly researched, and relentlessly progressive is the reason that I feel this way.
If I were blogging about other health topics, say, weight loss or fitness or nutrition, and did not have a chronic and progressive disease, I'm sure that I would have answered those questions very differently. I would have said that, yes, I do have control over my health. But in the absence of a disease which robs me of energy, endurance, and periodically impacts me severely enough to require days of severely limited activities, it's irrefutable - the potential for success in fitness, nutrition, and other similar issues would be much higher.
Answering these types of questions in such a limited format is so difficult. While I realize that my disease may progress and acknowledge uncertainty about that, I also realize that I am not completely vulnerable to any direction that autoimmune disease takes me. I do have control over what foods go into my body, how often I exercise, what medications I take, how much rest I get, which physicians I see, what kind of environments I put my body into, but most importantly - I have control over how much I know and understand about my disease.
That's a great deal of control.
I found myself answering very positively about my general sense of wellbeing separate from my health. I had an opportunity to think about and respond to questions regarding my support systems, my family, and my friends.
This one was pretty easy, actually. Early on, my purpose was to be a good wife, a good nurse, and a good friend. After my kids arrived, purpose number one was to be a good mom, and as long as I am a mom, that's my purpose, no matter what age my kids are.
Aside from family responsibilities, I have found a great deal of satisfaction in making information available to others dealing with my disease. This is different from making the claim that I'm an expert, or a definitive resource, which of course I'm not. All I can do is find legitimate sources of information and put them out there in the blogosphere along with my own personal experiences.
It was an interesting exercise, an opportunity to step back and make an assessment of The Life and Times of Julia the Sjoggie. However, enough introspection. Whew. It's hard work delving deep into a psyche as bonkers as mine.
We now return you to our regular broadcast schedule.
2 comments:
In the past I have participated in studies for both chronic fatigue syndrome and fibromyalgia, and have had to answer similar surveys. These are difficult to answer because very often the reply you have is not part of the replies supplied in the questionnaire. They are often prepared by psychologists and follow a specific pattern.
Knowledge is power, and as much as people are interested in learning about their disease and how to cope,and it is vital that we do so, you're right that living in the present is what we have to do.I don't want to know the future...the present is difficult enough to deal with.
Oh my - other then dry mouth, eyes, have very little appetite,
continually on the go and just thankful that at 3 score and 10 - I continue on with the thought that this Sjogrens Syndrome will just disappear - who knows - it may. I still believe in miracles.
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