Accepting That Doctors are Not Gods
This is going to sound harsh, and it is. It is one of many, many harsh lessons learned through dealing with a chronic illness. Learning not to fear new symptoms is a huge part of accepting chronic illness, and it isn’t fair, but that’s the way it is when your doctors dismiss everything that goes wrong, large and small, without so much as researching them first. I don’t catastrophize anymore about new symptoms, partly because I don’t have the energy and partly because it does not help, it doesn’t get me anywhere I want to be, and it sometimes can make a flare up spiral out of control. I’m scared of lots of stuff, but even having half of my face go numb for eleven days (like right now!), it just isn’t a big deal compared with the rest of my illnesses and the other weird, painful, and occasionally terrifying symptoms that crop up out of nowhere. I get crushing chest pains that go down my arm and feel exactly like I’m having a heart attack, complete with crazy blood pressure and all the blood flow to extremities and stomach shutting down and my lips and fingers turning blue.
Most people would have done differently, but the first time it happened, I was in too much pain to speak, it was like the wind completely got sucked out of my lungs. I didn’t even call my doctor, instead I asked my friends what was happening to me, and they knew immediately what it was and that I just had to wait it out. My chronic illness sisters were so compassionate and gave me tips to get through the attack based off of their experiences. I later learned there was nothing an emergency department could have done for me, and that my doctor actually didn’t care that I was having them on a pretty regular basis when I did tell her about them. She didn’t even put it in my chart notes. If I had gone in to the doctor that first time, it would have no doubt been a negative experience, and I need all the positivity I can gather when I am going through a scary or difficult symptom especially for the first time.
So at least in my unpredictable case with so much going on, actually expecting help from doctors is way more terrifying than having my face go numb and not being able to get out of bed because of severe spasms. Again.
That being said, I’m tired of being ill, and mostly of feeling so on my own when it comes to debilitating health issues. I want to go back in time three years ago and be a 20-something with a stressful but mostly happy living situation, and act like other 20-somethings and not be sick and stuck in my house all day every day. When I get injured, I want to still believe that doctors can fix it all. I don’t want to simultaneously have chronic fungal, bacterial, and viral infections that will not go away. I don’t want to look at my disgusting house and think, “hopefully my body lets me do the dishes at some point today” or “not even a possibility, don’t even look at it.” and then realizing that even if I fall over in the middle, I have to do them no matter what, because this is life and this is the rest of my life. I might sound stronger than I did a few years ago, but I feel the opposite. I feel fractured apart by chronic illness, even my thoughts are scattered and lack complexity and depth.
Part of what I want people who are newly diagnosed to know is that breaking down is okay. Being frightened is okay. All of your emotions are valid, and just because there is an emotional component to your pain and symptom flare ups, it does not mean you are to blame in any way for the failures of your body. You aren’t floundering because you’re weak, you’re floundering because being in chronic pain takes away some of your ability to think clearly, it shuts your brain down to an extent, and frequently, doctors lack the compassion to properly understand where you are coming from.
At first, chronic illness is overwhelming, it is losing friends and the ability to be independent. It is sadness, depression, anxiety, and feelings of being a burden and/or being judged lazy or crazy. In the beginning you don’t know when the losses will stop. Until one day you find yourself on the same emotional footing you were on yesterday, and then hopefully the next day as well, until maybe you have a day where you find yourself more “you” and at peace than you have been in a long time. I’m not saying the pain goes away or you get used to it or you should just learn to tough it out or anything, just that there is not enough room in our previously busy lives for the kind of suffering that chronic illness heaps on us. Part of the challenge is making room for the pain and being respectful towards it. It is a part of life now, and if there is no room for it, the suffering it causes spreads across every part of your life.
The more I make room for the pain and general feelings of being unwell, the better I am able to cope with the other symptoms, the ones that scare me almost as much as going to the doctor one more time.