“But you look good.” This is a response I have gotten more times than I can count when I tell people I have Lyme Disease. I do believe most people who say this have only good intentions, but a lot of times it does more harm than good.
One of the hardest social stigmas, when you are sick, is that you are supposed to look and act a certain way. So, when someone tells you that you look good, it feels like they are diminishing how you feel. And how you look and how you feel often have no correlation when you are living with a chronic illness. This is a blessing and a curse. On the one hand, no one wants to look sick, it’s nice to have your body not take absolutely everything away from you, but on the other hand, it’s a complete mind screw.
You can’t see that I’ve had a migraine at exactly 3pm every day for the last two weeks, that my hands and feet have been numb and tingling for 4 years straight, that my brain feels like it’s on fire when I try to concentrate on anything, or that my anxiety gets so intense I start to physically feel it in every part of my body. These are all invisible, but so real, and have nothing to do with how I look.
I remember a recent interaction with someone I hadn’t seen in a while. They asked how I was doing and why I was back home in Dallas. With anxiety and shame doing flips in my stomach I proceeded to tell them that I had Lyme disease which had gotten progressively worse causing me to move home and focus on my health. One of the first things the person said to me after I had just bared this very vulnerable part of myself to them was “But you look good on social media.” It took a moment for me to process that this was the first thing they chose to say to me after I had just shared this personal news. Not an acknowledgment of what I had just said, but a judgment on how the perception that they had created of me from social media didn’t align with what being sick looked like to them. I smiled at this person and quickly found a way to escape the conversation because I was now feeling even more shame and embarrassment about my health and decision to move home.
When you live with an invisible disease, you often fight self-doubt and worry about people’s perception of you. Those negative thoughts swim around in your head: “You are being weak, it’s not that bad,” “You are going crazy,” “What if this is all in your head?”. So, when someone tells you “But you look good” it fuels those negative thoughts, and those negative thoughts do nothing but wreak more havoc on your body and stunt the healing process.
Part of the reason I started this blog was to push against the stigma of what it looks like to be sick. When that person decided to focus on what their perception of being sick looked like vs what me, a person with chronic illness, looked like right in front of them, it made me sit back and think about how much weight I was putting on other’s perceptions of me. How focusing on their negative and ignorant words was doing nothing to help me heal my body or my mind. There are so many of us out here suffering in silence and self-doubt because of misconceptions of what life should look like with an illness. I know before I got sick, I couldn’t fully empathize with people who were ill. But I am here to tell you (and remind myself) that negative self-talk is crap. You AREN’T weak, you are extremely strong. You AREN’T crazy, you are brave. You AREN’T making this all up in your head, what you feel is real.
There is no right or wrong way to be or look sick. There is only you and what you need to do to move through your illness. Some days that might be pretending like you aren’t sick and going out and using every bit of energy and stamina you have to do something fun, other days it might be completely giving in to the pain and not even lifting your head off your pillow.
Just because it’s invisible doesn’t mean it’s not real. There will always be people who won’t understand or believe you. But you don’t need them to; you need to focus on yourself and your fight. Your real, true, valid fight to get back something most people take for granted. And for those who stay in the ignorance of not understanding and tell you “but you look good”, just smile because you know your truth, whether they can see it or not.