3 Ways to be Your Best Self with an Invisible Disability

By Ashley Ashbee

Transitioning from childhood to adulthood when you have an invisible disability is hard, but I’ve adapted successfully and I’m pleased to share my experience.

I have Dandy-Walker Syndrome, a malformation of the cerebellum, which controls movement, and the fluid spaces around it. This congenital defect caused the fluid in my brain to accumulate, a condition called hydrocephalus. A tube called a shunt was implanted when I was 10 days old to drain the excess fluid from my brain to my abdomen.

As a result of these conditions, I’ve always had mild problems with my stamina, balance and other motor and learning skills. When I was a kid, doctors, therapists and educators observed my difficulties and routinely assessed me for challenges in school. Most of the screening ended when I graduated from high school and the children’s hospital. By that time, my issues had improved and were even less visible.

Then just before I turned 23, I contracted a virus that injured my liver. I didn’t require treatment and it soon healed, but I was regularly unsteady and tired easily.

To make a long story short, I’m almost 29 and I still often struggle to avoid falling, stay upright and perform my regular activities. A neurologist and neurosurgeon told me that my Dandy-Walker explains my symptoms because the effects of normal aging and other factors have compromised my ability to compensate. They answered my questions vaguely and that has been the extent of my support, so I taught myself how to adapt to being an adult with an invisible disability.

Here are some tips to be your own advocate:

1. Learn about how your condition affects you.

If you appear fine in adulthood, you probably won’t be screened for quality of life or ability challenges. When you understand your body and rights, you can ask useful questions and seek medical, financial and professional support.

2. Disclose your disability to anyone for whom you have responsibilities.

It’s tempting to try to pass as normal, but you need accommodations to live fully and feel and function at your best. Ask for what you need. Also, if people don’t see that you have problems, they will expect you to do things that you can’t. This creates conflict.

3. Turn a problem into an asset.

Six years ago, I was mostly stuck at home and it was boring and lonely, so I started blogging about my health and I also blog and Tweet about social health issues. I learned how to generate web traffic and engagement and advocate for things I cared about online. I use these skills all of the time in my career. I became a freelance social media manager because I knew I would have a hard time working standard office hours. I work from home and I take breaks when I need to.

Adaptation has been the theme of my 20s. It’s been difficult, but I succeeded because of my persistence and determination. Never give up!

Ashley Ashbee is a social media strategist and writer living in Toronto, Canada. Check out her blog Beyond Passing Time and connect with her on Twitter.

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