My Life with an Invisible Disability

I don’t have a wheelchair. No crutches, no prosthesis, no visible signs of my disability.

I’m no stranger to weird looks when I get out of the vehicle after parking in a disabled space. I’m no stranger to the words “But you don’t look disabled.”

I realize that my disability is an invisible one. I realize that people cannot visibly see the pain I go through on an every day basis. Most people don’t see me having to adapt due to the pain.

I want to give you guys a little peek inside my disability. Some of it is to make you guys more aware, but mostly, I’m telling you for me. I want to tell you, so someone can see a little snapshot for what my life is like living with an invisible disability.

I am very restricted on what I’m able to do. The doctor has specific limits on me… walking no more than 15 minutes a day, standing, sitting, also no more than 15 minutes. If my knees aren’t elevated a lot of the time, they start swelling. The pain from it is intense, sometimes searing. I’m no stranger to waking up some mornings to not being able to move, because my knees have this stabbing pressure, and my back feels like it is tied up in a million knots. Zach has toys in my room, because there are many times where he and I lay there and play with his toys in bed for part of a day, just because it’s too hard to move. Take a peek at me on laundry day, and I’m probably sitting in a recliner, folding laundry, because I can’t stand up long enough to fold it myself.

And yes, there are days when I stand longer than usual, or have to do more walking than is typically allowed. I have to carefully plan these days out, making sure I have ample time to rest before and after them. Last weekend, at the Duncan Hines kitchen, I had to make sure I had sat down and spent plenty of time resting before that weekend. I had to make sure to ask for wheelchairs to take me where I was going in the airport after each flight. I had to rest for several days after the winning weekend, as well. In the evenings, I had to take pain pills to help me, and as soon as I got back to the hotel, and the next night, arrived back home, I had to ice my knees for extensive periods of time. Most nights, I have to ice my knees just to get the swelling down enough to move around.

It hurts. Because of my unique abilities and disabilities, it’s hard for me, if not impossible, to get a traditional job. Most employers won’t allow you to work from a recliner (seriously, though, if you’re an employer that will, contact me!) I want to work. I’m passionate about working, about landing my dream job in a marketing position, but it’s very difficult, given my limitations.

However, despite my disabilities, I am driven. I started blogging and working with brands in social media because it gives me a unique picture of how that side of things works. When I work with brands, I’m able to get a sneak peek into that world, before I’m able to enter it. I find opportunities in everything, and I work around my disabilities the best I can to do what I need to do. I am very goal-oriented, and when I set my mind to something, it will happen, sooner or later.

I know that there are people who don’t believe I’m disabled. I know this because there are many people who have said it to my face. I get questions, a lot. Questions like “How can you stand so much at Duncan Hines,” or “How can you sit through a class,” or whatever else. I just do. I find creative ways around things, and if all else fails, I take a pain pill and use ice, and make sure I can rest a lot.

My disability hurts. Sometimes it hurts so bad I can’t move.  It’s frustrating. I see all of the things that I want to do, knowing that it will be difficult, if not impossible, for me to do it myself. And it’s hard when people don’t feel like you are “disabled enough,” (yes, I’ve had someone tell me that before), because I don’t have all of the visible signs of a disability or a clear signal of my disability.

I’m not telling you guys this to complain, or to say “oh, woe is me.” I’m telling you because I think it’s important, and I think that people need to recognize that disabilities don’t always come in a simple box. I’m telling you because if you don’t have or deal with an invisible disability, you might not recognize it when someone else does. You might not realize that someone who is taking that handicapped space may not be in a wheelchair, but that doesn’t mean they can walk easily, either.

If you have an invisible disability, I totally feel for you. I understand what you’re going through.

If you don’t have one, I ask you for patience, for understanding, for hope that when you do encounter one of us living with this, you’ll see a little more into what they deal with because of what I’m telling you here.

I hope someday that doctors figure out how to “fix” me, but until then, I know that I’m going to continue living with this, finding ways to make it easier, and working on achieving my goals, despite my limitations.

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4 comments

  1. I really feel for you. I get the same but in a much lesser degree, (because I’m old and people think that makes it ok.) They can not see how I can’t breathe and walk at the same time or sometimes after just 5 or 6 steps my hip hurts so bad. Your message is needed. People are too quick to judge without having any facts- just glares.

  2. I am so glad for your message, It was what needed to be said and I thank you for that. I have an invisible disability (not as bad as yours) but I also get the looks and people saying thanks. I am sorry because before you I also would make remarks about people parking in handicap places when they didn’t look handicap. We need to know what we are talking about before we say or judge an individual. Thank you

  3. What a terrific way to share this message. I’m lucky enough to not know how it feels to live with such a disability and this post makes me aware of what hell you’re going through. Yet you don’t seek for pity and don’t want people to be sorry for you and that’s amazing. Thanks for the reminder that I never know what others are going through and that they always deserve my patience and respect! ❤

  4. I completeley understand, i have severe lower spine issues from radiation i received as a child. i walk with a small limp, im also a size 20 so people just assume im lazy and fat and its in my head. i get so down and feel guilty but i am also grateful that i am alive and how lucky i am. Its nice to see im not the only one ( i dont mean im happy you have issues like i do) but its hard, even my sister just tells me to lose weight and get a job even when i explained it all. Thanks for being strong to put yourself out there. We may never be able to get that majic pill or surgery and be 100% or “get over it” like some people think, but we are good people and doing the best with what God gave us.

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