Denial and chronic disease: Turns out that it's not all bad.

When we get a major diagnosis, even if it's one we've been expecting, there is always a certain amount of denial, at least at first.  Okay, the denial can last longer than just at first.  Just when we think we have come to terms with everything, denial sneaks up on us, and we find ourselves facing the realities of our diseases yet again.

One thing I have read about in studying fibromyalgia, my main diagnosis, is that loud music and other stimuli can trigger a flare.  One of my jobs on medical leave has been to figure out my triggers and learn how to manage my disease better.  I thought I had figured out most of them, and then I went to my daughter's high school band concert tonight.  I love band, and I love her concerts.  I was in band all through school, and I love watching her get better every year.  Tonight, though, for the first time, I reacted to the music and had a fibro flare.

It felt like the music was hitting me in waves.  Every nerve felt like it was on fire, and then my muscles tightened up.  I couldn't leave in the middle of the piece without crawling over people, and I wasn't sure I could even stand up at that point.  I sat there and used every pain control method that has ever worked on me and prayed for the piece to end faster.  I managed to get through without entirely breaking down and crying from the pain, but this flare up has yet to calm down in the hours since.

It all started with denial.  I was up all night in the emergency room with my fiance, sitting in a chair that got progressively harder to sit in as the hours passed.  Then, after a bit of a nap upon getting home, my daughter needed to get picked up from school due to illness.  (Yeah, it's been one of those springs for our family.)  Errands for meds and provisions were followed by the concert.  I was in denial of classic triggers for fibromyalgia: doing too much and getting overstimulated.  I had to be the good mom, the good fiance, and I was in denial about my limits and fibromyalgia reality.

Here's the really interesting part for living with chronic illness, though: denial isn't always a bad thing.  There are some studies that argue that denial is a healthy coping mechanism because it's based on hope: "Quite simply, being unrealistically positive may be a coping mechanism that helps people feel better and is associated with positive social relationships and motivation to work. Further, it appears to aid people to recover from particular health-related stressors (Scheier & Carver 1985, Carver et al. 1989, Scheier et al. 1989)" (Alvani, Parvin Hosseini, & Alvani, 2012).  While I would definitely not argue that my current flare up is a good thing, if I had just stoically accepted my fibromyalgia and decided I had to stick to strict limits, I would not have been there for my fiance, and I would have missed my daughter's concert.  The pain is worth what I got and was able to do in exchange.  Now, though, I know that loud band concerts can be triggers and can prepare better for the next one.

One could argue that we educators live in denial.  If we just stoically accepted our limits, we would have to give up on students and schools.  That just isn't in most educators' DNA.  The very nature of our jobs requires us to be optimistic and positive about the future, even when all the data says otherwise.  To be a disabled teacher means that we will revert back to that positive, living-in-denial teacher at some point, and that's okay.  Turns out, we'll have better outcomes because of that.  Don't let go of that hope, and indulge in denial now and then when needed.

References

Alvani, S. R., Parvin Hosseini, S. M., & Alvani, S. (2012). Living with Chronic Illness and Disability. International Journal of Business, Humanities and Technology,2(5), 102-110. Retrieved June 3, 2016, from http://www.ijbhtnet.com/journals/Vol_2_No_5_August_2012/11.pdf

 S. (2015, March 12). Hypersensitivity To Sensory Stimuli In Fibromyalgia ». Retrieved June 03, 2016, from http://www.fibrodaze.com/hypersensitivity-fibromyalgia/