They say that when you hear hoofbeats, you should think horses, not zebras. But I am here to tell you, that some of us are zebras. I am a zebra. You need not be scared. You need not be cautious, but you must be understanding.
Recently, my chronic illness has been flaring up. I've had a lot of pain in my hands this time a symptom that I hadn't ever experienced, and for the first time ever, I've had to express my limitations to pretty much everyone in my life. And that has been scary, so I'm here to give you some advice on talking to someone who has just told you that they have a chronic illness, and that they are struggling in the moment.
When someone comes to you in pain:
Don't Say: Oh I understand, I hurt my knee/hip/hand playing soccer last week.
Do Say: I can't understand, but I want to try (and if you can understand, please please please share in hospital stories and morbid jokes with me).
It's okay that you don't understand. I don't need you to understand, I just need you to be there. And frankly, you're probably not going to understand. I need you to acknowledge that right now, I'm not doing well, and I need you to let me be selfish, at least for a little bit.
Don't Say: How are you feeling? (If you don't want an honest answer)
Do Say: Can I help you with anything?
Obviously, if everything is hurting, I am not okay, and I hate having to lie, so that people don't have to deal with my problems. And I'm probably not going to be your definition of "okay" ever. I have a chronic illness that has become my "new normal." I'm used to the knee pain and all of the other things that come along with my rare disorder. But asking if you can help makes me feel a little less alone, one of the hardest parts of having such a rare disorder.
Don't Say: You're so strong.
Do Say: I admire your courage.
It's scary to tell people that you are sick. I was incredibly terrified when I had to tell my professors that I was struggling, and I'm a little bit scared to write this blog post. We live in a productivity driven culture that implies that you are "weak" if you aren't getting things done. And I don't feel strong when my chronic illness is flaring up, especially when I'm feeling quite alone and scared. Telling me that I'm strong is negating what is actually wrong. Affirming my courage makes me feel supported and hopeful for the future. Because I do feel brave. I feel brave for learning how to navigate Massachusetts General Hospital and for getting myself to the emergency room when I need to go and for calling my doctors. Thank you in advance for affirming that.
Thank you to all of you who have supported me so far, and thank you to those who will support me and others in the future. The only way one can survive is with support. Thank you for affirming my stripes.