Having a chronic disease is like living in the movie, Groundhog Day. For those of you who haven’t seen it, the movie follows a weatherman (played by Bill Murray,) who finds himself trapped in reliving the same day, Groundhog Day, over, and over, and over again. The movie is a redemption story, as the initially arrogant and selfish man learns compassion and kindness, and of course this is when the endless loop stops. We all know that the experience of living with chronic disease rarely has a Hollywood ending but having to deal with endless cycles of pain, disease, a bit of relief, then pain, and disease all over again gives you plenty of opportunity to try doing things a bit better each time.
For the past few years I’ve been cycling up and down quickly giving me many opportunities to observe my reactions to, and shift my behavior around, the various challenges that severe pain, fatigue, and dysfunction cause.
There is one particularly vexing issue that seems to continue to haunt me: the tendency of others to tell me what I’m doing wrong and how to cure my disease. For some reason virtual strangers as well as acquaintances feel the need to let me know that the paleo diet, or gluten-free diet, or ….fill in the blank, will miraculously cure the disease that I have been living with, quite well under the circumstances I may add, since age two.
However well intentioned, I am sure that these people have no idea that they are doing me more harm than good. The truth is that I have tried almost everything known to man, except venturing into the Amazonian jungle, to search for a cure. And I have beaten the odds in many ways even though I haven’t managed yet to achieve a long-term remission or cure. When I encounter another well-meaning person who gives me advice I feel demeaned and infantilized. I also immediately begin to doubt myself, every single time this happens.
The supreme confidence that people have when they give me advice also makes me envious; I have been humbled by my body too many times to ever feel like I can direct it. Quite the opposite, I think the best I can do is go with the flow, through the ups and downs, with as much grace as possible.
I don’t know the answer to the question of how to handle these conversations, to not get triggered into self-doubt when they occur, and not feel like I am being treated like a child. The best I usually do is to thank them for their input and leave as soon as possible so that I can give myself a private pep talk to get the mental ground back under my feet.
I understand that juvenile rheumatoid arthritis makes me look a bit fragile at times, and I know that people really do just want to help. I also know that in some ways I am living in my own private Groundhog Day, and although I will never have full control over what happens to me, I do have control of how I respond.
So with each passing day, I move closer to trust in myself and my decisions, knowing that eventually I will be able to smile, say, “Thanks so much for caring,” and move on, without faltering.