(Followed by) It could be Worse
It never fails that I discuss my health with someone who I trust and I hear the infamous, “Well at least you’re not dying,” which is typically followed by, “It could be worse,” and more often than not concluding with, “Get better soon.” Please, please, I beg of you who are reading not to make this mistake. If someone you’re close to confides in you a recently received diagnosis of some, incurable (but not terminal) illness, do not tell them “Get better soon.” This will almost always lead to hurt feelings and chances are we are already feeling vulnerable as not many people know or understand our illness. So, while we won’t get angry and we won’t say “How dare you ask me that,” we’ll just nod our head, probably say “Yeah, thanks,” and then just fade into our little chronic illness world where those who share our condition understand what we are going through.
Everything about each of those “well wishes” is incredibly wrong and it’s not your fault if you don’t understand. You are no different than the majority of the population who doesn’t know and so this is partly the reason for our silence; the other reason being the doubt that surrounds many chronic illnesses, leaving us feeling embarrassed we have this diagnosis and also questioning the validity of it. I’ve never really expected anyone to understand and I never took it personally when someone said, “At least you aren’t dying.” I know they mean well, but the crux of the matter is: while death might be permanent and you might think my situation is better, it’s not. There is little chance in the next 20 some years there will be a cure. They’re still searching for a cure for cancer. So, I will be 60 and still have this disease. I do understand my situation might improve and that might be something to stay positive over but, it’s hard keeping positive every day for 20+ more years for only maybe, a small change in my well-being. Is that pessimism? Maybe? I’d like to think I’m more of a realist. Even if I am of a sarcastic bent. It is truth I speak from my perspective.
Truthfully, I do not believe there should ever be a distinction between chronic pain from a serious illness/injury and cancer pain. Both are savage to the people experiencing it. Long term pain is savage just by virtue of long term, whether it is from cancer or RA. I think that until we reconcile this discrepancy, that we will not be able to treat chronic pain effectively and there will be continued problems in our health care with doctors not taking pain patients seriously, because there is this idea that “Well, it could be worse.” No. I am here to tell you that it can’t get worse, and while I would never presume to try and usurp the attention from cancer patients, because cancer is devastating and awful, I want light shed on those who are sitting in the shadows, hiding with their chronic pain because people won’t believe them. I want them to know that their pain is just as important.
My parallel drawn between cancer and chronic pain is purposeful. I have known people to have cancer, to fight it bravely and die. Some who are still fighting with every ounce of strength. I see in their eyes the battle and the exhaustion and I understand. My condition is not a death sentence which automatically shifts people’s empathy. They figure if it is not so serious that it could kill you then you should be okay and it might be a bad lot in life, but you’ll just have to soldier on. We all have something right? Unfortunately, this attitude is reflected in doctors as well and the chronic community is paying the price with an “opioid crisis” and doctors who downplay the pain a patient is going through. We need to sit around the table and talk about this. Have some true, honest discourse about the fate of our chronic pain/illness patients. We need to reevaluate: “well, at least you’re not dying,” and do better than casting our patients aside without enough meds and in so much pain that they wish they were dying.