The One Statement I Want to Hear From Loved Ones About My Invisible Illness

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’m 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 you’ve accomplished so much even with this condition”

“Does it really hurt all the time?”

“Is it a psychological thing?” or “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 doesn’t 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 you’re struggling. Why is that? Why do I need to prove myself to anyone else?

Chronic, invisible and physical illnesses can be challenging to confront each day. And when you identify with so many other things 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 can’t 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. But what’s challenging is that even when we give off the appearance of being “fine,” we’re struggling. 

The truth is, if I were to be honest about how much pain I felt 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.”

When people find out you have a chronic illness, their disposition towards you changes. Your accomplishments are elevated because we extend sympathies to those who “own their struggle” or because we can’t relate or feel uncomfortable, so we attribute praise. But I’m just me. I’m one ordinary person with this specific challenge. 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. Burnout is real. Running out of spoons is why I often “quit” at 9:30 p.m. 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 feels like genuine understanding.

Follow this journey on I’m Probably Overthinking This.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

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