Five Ways To Enjoy A Night Out With An Invisible Disability

Invisible disabilities aren't always obvious to onlookers. How do us disabled people prove that it's not the booze that's making us stumble?

Let's talk about invisible disabilities. How common are they? What does that term include? How does it affect one's lifestyle?

The term "invisible disability" includes a large spectrum of people with very different diseases. These can consist of, Muscular Dystrophy, chronic fatigue or pain, hearing or vision impairments, and mental disorders. There are said to be one in five people living with invisible disabilities. If they're so common, then why don't we know more about them? Probably because of lack of education, but that's a topic for another time. 

Abled-bodied individuals don't seem to understand how drastically disabled people are affected. Living with a disability means living with constant anxiety. Will there be an elevator at the event? If not, will there be stairs with a railing? Can I wear sneakers with my dress? Will there be dancing? Questions like these often loop in our minds until we arrive at the event and until the night concludes. 

If you're like me, a recent college graduate living with a rare neuromuscular disorder, then you know how exhausting this routine is. So how do you live life as an outgoing and spontaneous individual when your body can't keep up?

First, let me tune you into my life a little. I was diagnosed with Charcot-Marie-Tooth at one year old. CMT is a degenerative nerve disease, and no, it doesn't affect my teeth at all. Instead, it atrophies my muscles over time which causes weakness and deterioration. In addition, it causes fatigue and pain throughout my body.

My disorder is mild at this point in my life, and I'm capable of participating in many activities that I love, but it comes with a cost. Sure, I can go to the beach, but walking through the miniature sand dunes will strain my ankles. I can walk around Disney and enjoy the rides, but I'll be limping to the car later on. I can go out to the clubs and dance as long as you hold my hands, but I run the risk of twisting an ankle or falling over. 

I turned twenty-one this past September, and I couldn't wait to run, well, actually walk, to the bars! So my friends took me to a rooftop club to celebrate. After climbing the steps leading upstairs, I already felt exhausted. Everyone was dancing with their drinks in hand. My friends and I stood by the bar. As I stood there with a drink in my trembling hand, occasionally spilling down my fingers, I envied those dancers. The music blared, and I could feel the urge to move my hips to the beat. To sway with it and bob my head. But if I did, vertigo would take over, and I would be dizzy. 

A few drinks later, the inevitable happened. Liquid courage streamed with my blood, and the anxiety fled. I grabbed my friend's hands and swayed with her. We smiled, and I yelled for her to hold me. We enjoyed the rest of the night dancing and laughing together. 

The next day was rough. Not just because of the hangover, but because of the repercussions my body was facing. I had bruises the size of golf balls all over my thighs. My feet were blue and purple as they struggled to circulate blood. I laid in bed binging my favorite shows with a heating pad for most of the day.

I knew there were others like me. Others who wanted to forget about their invisible disabilities every so often so they could enjoy life. So they could enjoy simple yet pleasurable moments. So, I reached out to some girls who also live with CMT and shared my experience. We brainstormed ways to live with this burden and how to take care of your body while doing so.

1. Supportive Friends

The first and most important thing you can do to enjoy a night out on the town with an invisible disability is to go with a group of friends who respect you and your boundaries. There's nothing worse than going out with pushy people. If I tell you that I'm tired and need to leave, we're leaving. If I tell you I need to sit down, we're going to find a place to sit. Maybe it sounds harsh, and at one time, it made me feel selfish, but it's essential to my well-being. My health comes first, and anyone who doesn't understand that isn't worth my time. 

If you're a supportive friend of someone with a disability, there are many ways to help. One of my favorites is when my friends and I approach stairs or a few steps, and they extend their hand to me without thinking twice. It shows that you're thinking of us and considering our disability. Another way to help is by checking in. It's okay to ask us if we're doing okay. It opens the door for us to communicate how we're feeling or if we need anything. However, avoid being pushy with questions and stay away from suggestions. We know our limits, and we don't want to be babied. 

2. Shoes

Shoes can make or break your experience while going out. Even if your disability is mild enough for you to wear heels, I strongly advise you not to. Your feet will be furious at you the next day or even later that night. There are plenty of sandals that have ankle support and durable soles. I've found that short platform sandals make me feel secure. However, on some days, sandals aren't an option for me, so I resort to sneakers. Converse, Vans, and Reebok's have become my best friend. Luckily, they go with a lot of trendy outfits and even some party dresses.

3. Handicap Accessible Clubs and Bar 

There's nothing wrong with doing a little research before your night out. Google can be a helpful asset in this case. A simple search of the location can show you photos and reviews. You can skim the pictures and keep an eye out for stairs, railings, or ramps. Another thing I look for is seating. You need to take breaks and sit down occasionally. If you find that the location is inaccessible for you, then you can find somewhere else. The main goal is enjoying your night out, not stressing over stairs or uneven grounds. 

4. Mobility

There are plenty of mobility aids that can provide independence and freedom on the dance floor. Cane's would be the most ideal because they're small and convenient. The three main styles of canes are white, quad, and forearm. Each of these has different areas of focus for where your body needs the most support. If you may not require these aids often but still want to be prepared, try a foldable cane. It's there if you need it and tucked away when you don't!

5. Mentality

Your mental health will ultimately dictate if you can enjoy your night out despite your physical barriers. Your perspective and level of self-awareness matters more than anything. Communication is key to the lockbox of understanding. Respect yourself and set healthy boundaries. This will help you find supportive friends, mobility aids, proper shoes, and everything else needed to feel comfortable in your own skin. 

It took me years to acknowledge my disability. I was harsh on myself for being incapable of everyday things. I rarely told anyone in my life about my diagnosis in an attempt to ignore it. Partially because most people respond with ableist comments, but mostly because I hadn't accepted it myself. I learned to recognize my true self through writing, which lead to communication with those around me. Now, I introduce myself with my diagnosis. There's no shame in owning who you are.

So this weekend, get out there and dance like nobody is watching because nobody will be harsher on you than you.

Charcot-Marie-Tooth type 1a! Let's talk about it.

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