woman dancing as disco ball swings at her like a wrecking ball

Partying in Pain: Going Out as a Young Person with AS

It’s a Friday night and most young people in my university town are getting ready for a night out. Beer is flowing, lines outside bars are forming, and girls are straightening their hair and applying makeup. I’m sitting in my bedroom feeling anxious about the night ahead, wondering if it will be worth the pain.

I developed ankylosing spondylitis before I was of legal drinking age, so most of my experience with partying has come hand in hand with pain. First, I have to weigh the pros and cons of going out. Is it worth the suffering? Is it worth the extra pain I’ll be in tomorrow? Will I even have fun? If I decide to go, the next step is figuring how to make it through the night. There are many things that factor into my decision of going out or not, which I never had to consider before AS:

1. Saying “yes”

I wish I could say “yes” to every invite. But the reality is, I have to say, “maybe.” If a friend invites me to go out a week in advance, I may be feeling good that day, but I have no idea what my pain and fatigue will be like in a week. I feel flaky for saying “maybe,” but AS (like other chronic illnesses) is unpredictable, so I must make these decisions one day at a time. If I have to decline an invitation, I feel guilty, but my friends are understanding. Remember that there will always be another party, but you only get one body to take care of.

2. Standing

Going out as a university student usually entails standing in a line for a minimum of half an hour, only to go inside to a bar that has limited or no seating. Then, I’m expected to stand and dance for a couple hours. For me, this situation is a nightmare — no party is worth that all-too-familiar stabbing pain in my lower back. I avoid bars with long lines or no seating, which limits my options. Fortunately, I am blessed with understanding friends who don’t mind changing their plans to save me from pain. I can still go out and have a good time — I just have to stick to certain situations. Luckily, standing in a long line and squishing onto a packed dance floor isn’t much fun for anyone, so your friends won’t mind.

3. Alcohol

While I am in no way obligated to drink, alcohol is central to university party life. We all suffer the consequences of heavy drinking, but I have extra consequences to consider. Choosing to drink alcohol on a Friday night usually means increased pain for me the next day. I also have to be careful not to mix alcohol with any painkillers I’ve taken, as certain combinations can be deadly. The decision to drink is yet another factor that makes going out a laborious decision.

4. Getting home

When I’m out at a party, one thing is always in the back of my mind — leaving. I might feel okay enough to go out at the beginning of the night, but my pain can worsen at any time, without warning. So one of my main worries when going out is: what if I have to leave? The key is to let your friends know that you may need to leave early, and if possible, have a good friend agree to leave with you. Limping home from a party is easier with a friend by your side! You shouldn’t feel embarrassed for going home early, you’re just being smart.

As I sit in my bedroom getting ready for the night, all of these factors are running through my mind, like a giant, mental, color-coded Excel spreadsheet. I am envious of my peers who can go out spontaneously and carefree, but for me, every decision is made with AS in mind. I can still go out and have fun, with a few adjustments.

Surround yourself with people who get it

If you are someone with a disability who wants to go out and party, my best advice is to surround yourself with friends who are understanding, supportive, and accommodating. If anyone pushes you to do something that causes you pain or makes you feel ashamed for being unable to do something, they aren’t your friend. I’ve been able to enjoy many nights out in university, thanks to friends who listen to my concerns and accommodate where needed. Because of AS, I am no longer a typical 21-year-old university student, but I will continue to try to live as “normal” of a life as possible, occasional partying included.

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