Today is November 2, 2015. It’s also Color The World Orange Day! Color The World Orange is an annual event held the first Monday of November to spread awareness of CRPS/RSD.
RSD, which stands for Reflex Sympathetic Dystrophy, is something I’ve lived with each day for more than 10 years. It’s a chronic pain condition. Basically, my nerves constantly (that means all the time) signal to my brain that I am experiencing pain in both of my legs from my toes to my thighs. The cycle never stops. That means, I live in pain all day, every day. When I tell people this, I usually get the following questions/reactions:
- “So how can you do ALL those things?”
- “Wow that’s so impressive that you’ve accomplished so much even with this condition”
- “Does it really hurt all the time?”
- “Is it a psychological thing”/ “Is it all in your head?”
- “It must not be that bad.”
- “Can’t you just take medication?”
- “You don’t look/act/seem sick.”
These statements are so incredibly frustrating to hear! My illness does not define me but it is a huge and REAL aspect of my life. Instead I’d rather hear “I believe you”. Living with an invisible illness means that if you choose to tell people about your condition you constantly have to convince people that you’re struggling. Why is that? Why do I need to prove myself to anyone else? Similar to mental illness, chronic, invisible, physical illnesses are challenging to confront each day. And when you identify with so many other things (yay intersectionality!) in addition to your chronic illness those who judge have a hard time fitting the pieces of your life together. Apparently, if it doesn’t make sense by their logic, it must not be real.
For so many people living with chronic illness, we put up a front. Each day we go out into the world attempting to convince others (and ourselves) that we’re “fine” or “normal”. We have to, because we cannot allow our condition to control our lives or confine us. We can achieve and be excellent despite of or in the face of our chronic condition. Each day, we face a demon that wants us to stay down. It’s a demon we have to overcome. But what’s challenging is that even when we give off the appearance of being “fine” we’re struggling. And then, if we’re successful, people assume we are fine. What complicates this is that once they assume you’re fine they have a difficult time hearing that you’re not. And when they do, their disposition toward you turns to pity or astonishment. The truth is, if I were to be honest about how much pain I feel each day it would likely make others uncomfortable. When I do tell people, they’re impressed by me. Don’t be impressed by me. Please. This is just who I am. We all have things that challenge us and shape our identities. This is one of mine. Instead, please accept my story and take this as an opportunity to learn more about the multiple dimensions of me. I live in pain each day and I’m incredibly good at putting up a front. Sometimes this gets me in trouble because I’ve gotten pretty good at ignoring my physical (and sometimes mental) obstacles in order to live a “normal” life and do everything I expect for myself. Sometimes that makes me work harder and push myself more. I can’t allow my pain to rule me. I have to literally triumph over pain and then some each day. The extra bit is to prove to whomever that I am more than my diagnosis and that my accomplishments are above and beyond simply “in spite of my condition”.
As I mentioned, when people find out you have a chronic illness their disposition toward you changes. Your accomplishments (the ones others use to craft their opinions of your success or worth) are elevated because we extend sympathies to those who “own their struggle” or because we can’t relate and we feel uncomfortable so we attribute praise. I’m just me. I’m one ordinary person with this specific challenge and I’m here to say it’s a constant part of my life but it’s not the only part of my life. I’m a Spoonie. In some ways, I need to be constantly aware of my daily obligations so I don’t burn out. Burn out is real. Running out of spoons is why I often “quit” at 9:30 PM these days. But that’s my reality. And, all you get to do is accept that and support me. You don’t get to judge and decide for yourself based on my actions how severely I’m suffering or how real my pain is. You don’t get to decide for me if I’m making this up. You get to listen and validate. And gosh! Validation feels so good! Validation sounds like “I believe you”. It sounds like “what do you need from me”. It presents like genuine understanding.