While my chronic illness caused me to miss out on several activities in high school, I was able to go to both the junior and senior prom dances. While I wasn’t actually diagnosed with Chiari Malformation until a few months after my senior prom, I had experienced symptoms of the condition for the entirety of my high school career, and knew that going to prom with Chiari Malformation would require some advance thought and that I would have to make some accommodations/modifications for myself so that I could enjoy the evening. Here are my tips for going to prom with Chiari Malformation and similar chronic illnesses.
First, what is Chiari Malformation?
Chiari Malformation is a neurological condition that is caused by my brain being too big for my skull- my brain overflows from my skull and descends into my spinal column area- I literally have too much brain to contain. Because of the pressure on the occipital lobe/the back of my brain, I live with several neurological symptoms, and the condition contributes to my existing visual impairment/low vision as well. Chiari Malformation is present at birth, though people may not experience symptoms until they are older- in my case, I was 14 years old.
At the time of prom, some of the most significant Chiari Malformation symptoms I experienced include:
- Constant headache in the back of the head
- Chronic back, neck, head, and shoulder pain
- Vision loss- Chiari Malformation is present in 30% of people with my eye condition, accommodative esotropia
- Numbness in the hands and feet
- Leg spasms
- Problems with coordination and fine motor skills, including trouble walking
- Chronic migraines with flashing lights as a trigger
- Sensitivity to light (related to migraines)
I recognize there are multiple chronic illnesses that can mimic the symptoms of Chiari Malformation, as well as other comorbid conditions, and also that some people do not experience any symptoms related to Chiari Malformation. To learn more about Chiari Malformation, talk to a doctor or read a trusted medical site for more information.
- How I Explain Chiari Malformation
- Why Everyone Should Design For Chiari Malformation: My Talk At ID24 2020
Picking out a prom outfit with chronic pain
I wanted to wear a traditional prom dress for both my junior and senior prom, but found that a lot of the dresses available at the mall were filled with heavy embellishments like beads, sequins, or multiple layers of tulle. I knew that I wanted to avoid heavy dresses that would aggravate my back and neck, but I still wanted to have something that wouldn’t stand out as being different from the other students.
When I told my friend about this, they suggested I look for a dress that was advertised for homecoming dances, which tend to be somewhat simpler in design than prom dresses while still featuring on-trend details. My junior prom dress featured an illusion effect that made it look like it had multiple layers, though I discovered the halter neck really aggravated my head by the end of the evening. My senior prom dress featured a long skirt, trendy pattern, and had lightweight floral embellishments across the top- and since I timed it with a sale, I ended up only paying $20. I ended up adding ribbon shoulder straps and a shoulder covering to make sure that the dress stayed in place and found that it was easy for me to move around without restricting movement or overheating.
I still was learning a lot about choosing jewelry for chronic pain in high school, and enjoyed experimenting with different styles. For my junior prom, I wore oversized lightweight geometric earrings that provided a bold statement without weighing down my head that were purchased at a now-defunct accessories store. For senior prom, I chose a small pair of dangle earrings and matching necklace made with cubic zirconia.
Other prom accessories
I chose to wear a pair of flat shoes to prom because like many people with Chiari Malformation, I have great difficulty walking in heels. I had attempted to wear a small pair of heels based on my friend’s recommendation to junior prom, but ended up not being able to walk in them and had to switch shoes before we left for the restaurant.
Since my prom dress did not have pockets (which my date found surprising), I ended up carrying a small clutch purse with a long strap I could easily throw over my shoulder. My friend had suggested I write my name on a piece of tape on the inside, which everyone in our group did to make sure we had the right purses.
- Writing Image Descriptions For Red Carpet Outfits
- My Favorite Shoes For Chiari Malformation
- Choosing Jewelry With Chronic Pain
Choosing a hairstyle for prom
Traditional updo hairstyles or braids can put pressure on the back of the head and aggravate existing chronic pain for some people with Chiari Malformation. For my senior prom, I chose to do a half-up hairstyle that involved braiding half of my hair and twisting it into a rose shape, while the other half of my hair was curled and rested on top of my shoulders. My friend’s incredibly talented brother ended up doing my hair and we spaced out the styling over about 45 minutes, taking frequent breaks to make sure my neck was not aggravated from having to stay in one position. We tried to minimize hairspray and pins on my head as much as possible as well to avoid triggering any other pain areas.
Mapping out the venue
Prior to prom night, I looked up pictures of what the venue looked like so that I could know what to expect, especially since the space would likely be dark or have reduced lighting. I was able to take note of where stairs/ramps were located, where the bathroom was, and also where we were in relation to the hotel lobby. Since this was before I started using a blindness cane, it was helpful for me to know about the location of obstacles in advance.
Talking to my date about my chronic illness
Both my junior and senior prom dates were very familiar with my chronic illness since they were also my best friends (shoutout to J and K!), but it still helped to talk about how we would navigate prom and what to do if I started getting disoriented or otherwise not feeling well. One of them actually surprised me by bringing earplugs so that we would be able to block out some of the super loud music, and we made sure that they felt comfortable serving as a human guide with helping me get through crowded environments.
Getting prom photos taken
We took prom photos during the day or indoors in well-lit environments to avoid having to use flash photography, since rapid fire flash photography can be a migraine trigger. For prom group photos, we also avoided taking photos on the edge of fountains or similar areas where someone could easily lose their balance and fall down with disastrous consequences. For junior prom group photos, the photographer had us take photos near a giant staircase so that I would be able to lean on the railing and balance myself.
Finding a safe/quiet place
This was probably the most important thing for me when going to prom with Chiari Malformation. These events are often very overwhelming for someone with chronic illness or sensory issues, so it helps to have a safe or quiet place to sit during breaks or when things get too loud. My date and I found a couch area about 50 feet from the ballroom where we could still hear music (though quietly) and avoid flashing lights. We spent about half of our senior prom in that area, sometimes dancing to the music in the hallway.
How I minimized my exposure to flashing lights
While I’ve never heard of a prom that didn’t contain some amount of strobe or flashing lights, some of the techniques that helped me minimize my exposure to flashing lights included:
- Asking the photographer not to take photos of me so that I didn’t get surprise camera flashes in my face
- Avoiding the center of the room where the lights were flashing
- Wearing tinted glasses to minimize the brightness of lights
- Gravitating towards a more well-lit area of the ballroom where the lights were less intense
- Turning my back to the lights
- Dancing in the hallway when the lights got too intense
- How Tinted Glasses Help My Light Sensitivity
- How I Explain Chronic Migraine
- How To Check Videos For Flashing Light Sensitivities
Other tips for going to prom with Chiari Malformation
- If you get migraines from eating certain foods or have food allergies/intolerances, make sure that there are safe foods to eat at the dinner before prom. Going hungry is not fun!
- Keep a mobility cane in the car or in another safe area if possible, as it may be difficult to walk after standing for long periods of time
- Wear earplugs to block out loud music
- Bring a jade roller- the cooling effect often feels nice on a pounding head and it can easily fit in a pocket or clutch