I have started writing this post at least twenty times and stopped for fear of seeming to be a whiner, or pandering for sympathy, or some other such nonsense. Then I learned that nearly half of Americans suffer from a chronic illness, and ninety-six percent of them suffer from what is known as “invisible illness.” An invisible illness is just what it sounds like, a very real illness that has no signs or symptoms that can be detected by a casual observer. A broken leg is not an invisible illness, but most autoimmune disorders are. Most cancers are invisible illnesses, the exception being some skin cancers. In fact, there are very few chronic illnesses that are visible, and that leads to comments from well-meaning people who say “you don’t look sick.” Those comments, no matter how well-meaning they may be, never help. To the ill person they sound very much like they are not believed.
Generally speaking, American Christianity has not had an answer to suffering or chronic illness. In its zeal to explain away suffering, it has failed to provide much in way of support or solace to those whose suffering will not be resolved. In fact, in may Christian circles unresolved illness has been depicted as being caused by a lack of faith. Needless to say, such “explanations,” as with all such attempts to blame the victim, miss the point entirely.
I first injured my back at work when I was twenty-five years old. I didn’t file a worker’s compensation claim, and the medical technology of the time couldn’t detect the extent of my injury. For just over two decades after the initial injury my back would go into bad spasms for several days two to three times a year. In my late thirties I developed chronic pain and weakness across my body. After having about every test imaginable without gaining any answers, I did my own research and suggested that I might have fibromyalgia. After seeing a Rheumatologist, my self-diagnosis was confirmed. Eventually, that flare passed and while I had fairly constant low-level pain I was again able to stand without assistance. Given some of the details of my childhood I am pretty adept at blocking my awareness of pain and so I wasn’t very incapacitated.
In 2006 I had ankle and shoulder surgery to address chronic problems for doing the foolish thing that so many men do – not getting injuries treated and so allowing them to get worse. Those surgeries were very successful, and I forged ahead believing I was good as new. Then, on a day I don’t think I will ever forget, on December 26th, 2007, something changed in my back and I found myself unable to walk more than thirty feet without stopping to sit or squat and wait for the pain to subside. On February 8th of last year I had spinal fusion surgery. I had been on the verge of complete disability, and surgery truly did give me my life back – but no procedure is perfect, and I still have chronic pain and physical limitations. There are good days and bad days, all of them better than my days before the surgery but many of them very uncomfortable and limiting. From one day to the next, I never know what I will be able to do, and that’s a struggle. What I do know is that the nature of chronic illness is that I will not get better, and over time my condition will deteriorate.
Half of America lives with some version of my reality. The specifics are different, but the experience remains very much the same. My journey has taught me the meaning of surrender. It has taught me that there are times in our lives – sooner or later – that we become dependent upon the kindness of other human beings to be able just to get to the bathroom. I have been blessed with an incredible wife who has taken care of me when I have been incapacitated and never complained, yet I know this isn’t what either of us signed up for. Chronic illness forces us to admit that we aren’t invincible. It will torpedo the ego, but the ego doesn’t go down without a fight.
This much is certain – chronic illness is never about God punishing anyone, or a lack of faith, or anything similar nonsense. Chronic illness happens, and the most important question isn’t “why?” because that is a question to which there may be no answer. The right question is always, “what now?” The problem is that the answer to the “what now?” question keeps changing. Can we surrender to whatever the future holds? Can we release our story, our version of what life is supposed to be and open to what life really holds for us? Make no mistake, none of these tasks is easy – but we all face them, illness or not, sooner or later.
We need a spirituality that addresses real life. It’s great to develop complex theologies that answer questions that will never be asked, but it’s much more important to develop a spirituality that equips us to journey with one another along the unpredictable adventure that is real life. We need to surrender the need to develop tidy little packages that help us avoid people’s feelings and instead provide people with the tools they need to hang in there with people in all different emotional states. Spirituality should equip us to create community, not avoid it, and teach us to accept people where they are in life – knowing that we will be there one day ourselves, quite possibly long before we expect to be.
One thought on “The Spirituality of Chronic Invisible Illness”
I completely agree. I don’t mean to repeatedly criticize Christianity, but in my case, none of the churches I attended handled depression and anxiety in a healthy, beneficial way at all. None of them. They are behind the 8-ball in many aspects. I can only hope that more and more Christians continue to reconsider their perspectives and teachings.