Some days I completely forget I’m sick. Other days it’s all I can think about. A few times in the last few months I’ve broken down crying in the hematologist’s office. Sometimes when I’m stuck on a thought, the nurses and doctors at the center tell me I’m lucky and it could have been much worse. While that may be true, is that supposed to be comforting? Does hearing that ever actually make anyone feel better? Why are we so quick to compare other people’s tragedies with “the big picture”? All it does is trivialize what the person is thinking and feeling and going through. Doctors seem to think that as long as a patient isn’t terminal, they’re “lucky”. I certainly don’t feel lucky.
Beyond medical personnel, some people have been quick to downplay my diagnosis and suggest causes for my immune system failure – diet, exercise, stress, genetics, etc. All I can figure is that no one wants to believe they could just wake up tomorrow to discover their immune system is shutting down and destroying itself without any cause or warning. So they trivialize. And make excuses. And rationalize the situation so as not to worry themselves. But that’s the reality of what happened to me. And trivializing it leaves me feeling guilty about something completely out of my control. This happened TO me, not BECAUSE OF me. Even still, I’m supposed to be able to trust my body to work properly and instead my immune system literally turned against me overnight.
Why can’t medical personnel hear bad news and just say “I’m so sorry this happened to you” or “that sucks” or “nobody deserves that”? Why are we so quick to write someone off just because things “could have been worse”? That hardly changes the fact that they could have been infinitely better – I could not be sick at all. It might just be me, but hearing how much worse something could have been isn’t comforting. It focuses on “if/when” scenarios, which my mother always taught me to avoid. Growing up, she wouldn’t even answer or acknowledge a question my sister or I had if it started with “if” or “when”. She didn’t want us living in hypotheticals. At the time it was extremely frustrating, but now I find realism to be a comfort. Blind optimism makes it THAT much harder to cope when something does go wrong. And spending time focused on the hypothetical only serves to distract me from the real problem at hand. So while I appreciate that the nurses are saying whatever they think will make me feel better, I really wish they would stop telling me I’m lucky.
I believe everyone has their own breaking point – their own tolerance for pain, destruction, heartbreak, etc. I hit mine years ago. So who am I to tell someone what they should be feeling? Even if I’ve been in their shoes, the way people handle bad news varies greatly from person to person. It’s based on past life experiences in relation to the current situation. Just because two people handle information and bad news differently, doesn’t mean either person is wrong. We can’t compare ourselves to others. We all have a basic human need to feel validated. I need to know it’s okay to be upset. My diagnosis is devastating for ME and that should be all that matters.
In general, people often tell me to put things into perspective. In other words, “there are people dying in Africa – this isn’t that bad”. I wish humanity would stop generalizing these things. Putting things into “perspective” means relative to my own experiences. Comparing a chronic diagnosis with starvation and disease in Africa makes no logical sense to me because it’s too hard to relate to. It’s like comparing apples to oranges. I can only compare my diagnosis to the other things I have been through in MY life. And while I have fought my way through some crappy situations, they were one-time occurrences. The hardest part was healing emotionally, but time was on my side. As the years went by, emotions were easier to control and memories began to fade. Therapy helped to make things easier to understand and I learned valuable ways to cope with the painful memories. Ultimately, though, the painful thing was just that – a memory. It was in the past. My only responsibility going forward was to heal.
This diagnosis though is nothing like that. It is a constant work in progress. It isn’t going to “go away in time”. It isn’t going to become some distant memory as I get older. My treatments and appointments will become less frequent when I’m in remission and I will hopefully be able to go years without treatment, but there is no “cure”. There is no end date. No one can definitively say how long remission will last or when my next hospital stay will be. The unpredicability and uncertainty terrifies me. The best I can hope is that time will make the emotional impact this has had on me easier to handle. “Time heals all wounds”, but time will not heal this
