This is one of the most passive aggressive things someone has ever said to me. It’s a question that always made me very uncomfortable especially since it’s formulated to be more of a statement question, you don’t look sick? So, is the person trying to say that I’m actually not sick because I don’t look it. In the beginning stages of my disease and even now when I’m having a good day, I often didn’t look on the outside how I felt on the inside. I was diagnosed at twenty, when you’re just starting to date seriously and plan for your future. An autoimmune disease happens when the body’s natural defense system can’t tell the difference between your own cells and foreign cells, causing the body to mistakenly attack normal cells. This type of overactivity can surely account for one of the major symptoms of an autoimmune disease, fatigue. “You don’t look sick” was something I heard a lot when I was young because many of the symptoms were things I could mask. Yes I was tired, but I could just drink a lot of tea (coffee would’ve been better but I can’t stomach the stuff). Yes my joints hurt, but at a young age my medication was really working for me so I could mask that too. But, there were times when I just couldn’t mask it internally. The symptoms would be sudden and severe and I would out of nowhere feel the need to sit down, leave, hide. “You don’t look sick” was something I tried to pride myself on. It was an invisible disease and I tried really hard to live a normal life and to talk about IT as little as possible. I was afraid to tell any potential boyfriend that I had a disease. Would he run? Why would he want to be with someone who is at risk of getting really sick? Who would want to be with me? All of those negative thoughts were for nothing. The person that ended up being important enough to confide in didn’t care one bit about my Ankylosing Spondylitis in the best way possible and we have been happily married for over 10 years now.
When my disease took a turn for the worse shortly after giving birth to my son, I had many “you don’t look sick” moments. One moment that really stands out to me was when I was a new mom. I was very sick, in a complete flare, bloodwork was a mess and I had to go to many of my appointments alone with baby because even though my husband wanted to be there, one of us had to work, and he worked hard to keep us afloat. I unfortunately had so many appointments because they didn’t know what was wrong with me. Life was hard. My son would start crying in his car seat and I would always start by trying to rock him with my foot. My ribs were on fire, my spine was stiff so picking him up and bouncing him around was a last resort for me. The looks of disdain I would get and the silent echo of “pick him up” that I would hear in my head was heart-breaking. No one understood that I felt like I was being stabbed in my spine because I didn’t look sick.
Crossing the street was another one of these moments. I walked rather slowly one day because my spine was stiff and my right hip was inflamed. Did the driver waiting honk at me and tell me to hurry up? He sure did. I didn’t look sick. In his mind, I was being a diva and just taking my time. People will judge you on the street, at work, in your social circle, anywhere and everywhere. It took me a long time to stop caring about what others think about me. It took me too long to take off the mask. As much as an autoimmune disease doesn’t define who I am, it still does play an important role in why and how I am. It’s important to share your story with others. It’s important to let others in on your bad days so that you’re not alone and they don’t just say or think “you don’t look sick?”
Here is a link to the PDF version of the Spoon Theory explained by the one who came up with the concept, Christine Miserandino. I’ve also attached the YouTube video. Give it a chance, it gets better as you listen. I cried my first time because I related to her so much. It’s a great way to explain to others how you feel on a daily basis and what you have to go through for them to say “you don’t look sick”.