Advocating For Yourself with an Invisible Disability

By Katie Woodward

Living with a traumatic brain injury hasn’t been easy at all. People can’t see my pain, and they can’t see that I’m sick. I always say, “I look fine on the outside, but if you could see inside my brain, you’d be shocked that I’m even functioning.” Some days, I don’t know how I do it either.

Living with an invisible disability is tough in the medical world, too. When you have a TBI and anxiety, a lot of medical professionals assume it’s just anxiety. It took me more than a year of fighting with one of my doctors to get a referral to a neurologist. She kept saying it was my anxiety, and even when she finally referred me, her notes said it was just to ease my mind. That was the last straw for me — I switched hospitals. Now I have a primary care doctor who listens to me and works with me to figure out what’s going on. I feel so much better about going to the doctor now.

I love medical professionals who listen to their patients and treat them like people, not just numbers. I went through treatment at On With Life, and they treated me like a person. They created a custom plan for me and my life, and I really don’t know where I’d be without their treatment.

In my experience, when you’re living with an invisible disability, it can be hard to get financial help. It’s hard to get on disability because they can’t see your needs. They can’t see my brain, so I have to jump through more hoops to prove that I’m sick and need these services to survive.

It can feel like you have to advocate for yourself even more than you normally would when you have an invisible disability, because you never know when you’re going to have a bad day. You have to be able to say, “I don’t feel good today, and I need to rest,” or “I’m not being lazy; I physically can’t come to work today.” In today’s workforce, it’s easy to get a reputation for being unreliable, which really hurts and makes you feel like a failure. I own my own business because of this. I’ve worked many part-time jobs since my TBI almost six years ago, and in all that time I only had one boss who truly understood and didn’t punish me for needing time off. I was so grateful for her. She gave me the courage to show the world that I can be a productive person in society.

When you advocate for yourself, you’ll find there are many programs and services for people with disabilities, especially through Vocational Rehab. Here in Iowa, I work with the Iowa Voc Rehab Small Business team, and they want to help people with disabilities be functional members of society. I’m working with my counselor to get the things I need for my business to expand and become profitable. There are so many resources available, but I didn’t know about them until I got on the board of Iowa APSE. The board members helped me find programs and services I should have been on years ago. I discovered so many programs, but many have long waitlists and the paperwork can be frustrating, so I gave up many times.

Before my TBI, I didn’t give up easily. I worked at a local TV station as a national sales assistant, and I had to learn the job quickly. I could have given up, but I didn’t. I saw it as a challenge. And while it feels like I get frustrated easily and give up quickly post-TBI, I do feel like the “old me” is slowly coming back. I’m getting my courage back. I don’t want to keep living paycheck to paycheck, relying on family, and feeling looked down on because I can’t afford to go out. (That’s a big issue with invisible disabilities. You wouldn’t tell someone with a visible disability that they can’t come to something, but people do that to me.) That’s one reason I’m raising awareness about TBI. People don’t realize that a traumatic brain injury – and its lasting, sometimes invisible effects – can happen to anyone.

Woodward is an entrepreneur, advocate, and TBI survivor.