By: Denise Reich
I was in a shop with some friends when the subject of jobs arose. For a lot of people with chronic illness, including myself, this is a loaded topic. I briefly mentioned that my aspirations had needed to change due to illness and I wasn’t working. It prompted a lecture from one of the store’s proprietors. He said, and I paraphrase: ”You can do whatever you want, it’s all about choice. Just choose to do it.” The guy didn’t know anything about what I was facing; what my obstacles actually were, or anything else. He had simply decided that none of them mattered, because everything was “all about choice” to him. It’s not the first time I’ve heard such a statement, and it probably won’t be the last.
Don’t get me wrong: we all make choices that influence our lives, our health and our relationships with others. Sometimes our choices end up being beneficial; sometimes they don’t. There’s no debate there. For instance, my occupational therapist assigns stretches and exercises for me to do outside of my OT sessions. My doctors prescribe medication for me. They can talk until they’re blue in the face, but they don’t go home with me. It’s my choice to follow their instructions. I do so, because it helps. I choose to educate myself on my conditions and medications so I can make informed decisions on my treatment plans. I choose to be particular about nutrition and read labels.
Do these things improve my life? I’d like to think so. Do they cure my conditions or mean that every single limitation goes away? Nope. And that’s the rub.
The “all about choice” folks tend to believe that everything can be unilaterally controlled by one’s choices. They tend to conflate one’s ability to make reasonable self-care decisions with the ability to decide to triumphantly overcome all the obstacles and challenges posed by one’s condition. They’re implying that if a person with chronic illness or disability isn’t working, getting better or doing every single thing they want to do, well, it’s their fault because they’re not choosing to do it. It gives them an easy way to deny the existence and validity of any limitations a person with disabilities or chronic illness might have.
Hey, I know about denial. It’s one of the five stages of grief in the well-known Kübler-Ross model. It’s something a lot of people with chronic illness have experienced, and I’m no different. When I first became seriously ill, I did exactly what those “choice” fans would like us to do: I denied and denied some more. I tried to completely ignore the severity of my condition. However, as I found out the hard way, denying that something is real doesn’t make it go away. When I pretended I wasn’t sick and forced myself to do more than I should have done, I just got sicker. There was no other possible outcome, because I actually was ill, and no amount of denial could change the biochemical processes happening in my body that were making me sick.
They’ve actually done studies on this, in a roundabout way. The PACE trial in the UK for myalgic encephalomyelitis (ME) seemed to operate on the principle that people with ME were unwell because of “illness beliefs,” and that if they could be convinced to change those beliefs and pushed to exercise, they’d get better. Unsurprisingly, it didn’t stop the physiological processes that were making patients ill. Many patients were sicker when they ended the study than they’d been when they started it.
You might fight as hard as possible and think positive until you make Pollyanna and Rainbow Brite look like nihilists, but you still might end up with an incurable chronic illness that impedes your ability to do everything you want to do. You might be incredibly driven to succeed in your chosen field and still find yourself derailed into unemployment by your health. It’s the understatement of the century to say that chronic illness shakes things up.
The “it’s all about choice” brigade doesn’t get just how much we already push ourselves, either. They don’t understand that our progress isn’t always discernible to onlookers. In reality, we’re way tougher on ourselves than they could ever fathom. Many of us walk a tightrope every single day, trying to figure out just how many clever and daring tricks we can do without falling. We’re not on a normal wire, either….we’re more like the lady in the Tightrope Walker portrait in Disneyland’s Haunted Mansion. Not only are we striking a very precarious balance, but we’re standing on a frayed tightrope and there’s an alligator waiting in the water beneath us. We didn’t put the alligator there and we don’t have the means to send him away. We can only try our best to stay balanced so we don’t fall in the water.
None of that matters to some people, though. They’re in the denial stage too, and they’re content to stay there. They’ve decided that physical, financial and logistical obstacles posed by disability and chronic illness are somehow elective, and will disappear or become minor trifles if one simply thinks positive and chooses to make it so. Jean-Luc Picard just wouldn’t be down with that directive.
Loud and clear, for the people in the back: I did not choose to get sick. I can’t magically choose to live the same life I had before I was sick. The only choice available to me is whether I am going to optimize my life with my illnesses as best I can, with the best resources I can access at any given time.
When I mention that I am simply not able to safely do some things, I’m saying that I know the limitations of my body at this time. I try to do as many fancy steps as my precarious tightrope will allow, but my repertoire’s a bit smaller now. It’s not a matter of not wanting to do it, not exerting enough effort, or failing to believe in myself. It doesn’t mean that I don’t want to enjoy my life as much as possible and reach my full potential. It doesn’t mean that I don’t have goals. It doesn’t mean that I’m not going to look for solutions to problems. It does mean I’m aware that my illnesses change the game.
And yes, this also means that I need to spend a fair amount of time concentrating on my health. That’s not pathetic; it’s proactive. Hopefully, medical attention, monitoring, physical therapy and attention to my emotional well-being are going to help me preserve as much function as possible, but they’re not going to magically change everything. It probably will not fix things enough to send me back to work… but despite what our society tells us, that’s not the only measure of a person’s worth.
Those who respond to chronic illness with empty platitudes about “choice” need to realize something: the choices are really theirs, and they’re making the wrong ones. They’re choosing to gaslight us by trying to convince us that the battles we face aren’t real or significant. They’re choosing not to consider what our illnesses, disabilities or disorders really mean for us in our daily lives. They’re choosing to pressure us to conform to their expectations instead of acknowledging us as we are. They’re in denial, and they’re not moving past it. They’re making conscious choices not to exercise compassion and understanding. And that’s on them, not on us.