Yay, part two of the Chronic Illness and Conventions series! Remember, this is not only relevant to conventions, and can be applied to any situation when you are not at home and among strangers. Theme parks, concerts, whatever!
Part two is all about Planning. Planning for the unexpected, having a plan for anything related to your chronic illness. Here are some examples:
- A person with diabetes will have insulin/glucose tabs/snacks on hand.
- Someone with a chronic pain illness (fibromyalgia, lupus…) will have a walker or cane if their pain can reach that point. Maybe they will have pain medications within easy access.
- Asthmatics keep a rescue inhaler nearby.
- Someone with extreme allergies will have an epi-pen on them.
Now, I know what you are thinking, Duh, Silly Rabbit! Of course they will have their supplies with them! I know that. The point of this post is not “don’t be irresponsible,” it’s “have a plan.”
The reason that I am having a full post in this series about having a plan and dealing with the unexpected is because it is seriously important. Now, in my experience with working with conventions in both hotels and convention center venues, there will always be resources available. Security teams from the event and the venue, as well as local police, and medical personnel is required by many (not all) venues during large events (like the popular dances at conventions). They are there to help you if you see something (like possible shoplifting or harassment), need something (like you locked your keys in your car or lost something), or in case of an emergency. These resources vary by event and by venue, so if you have any concerns, feel free to email the event staff in advance, and they can tell you which will be at their event.
Now, I cannot stress enough that while they are there to help you and keep everyone at the event safe, they have to keep everyone at the event safe. This could be thousands of people. They are not there to focus on any one individual. That could prove unsafe for the other patrons present. Now, don’t get me wrong, if there is an emergency, that emergent case is paramount and will be the main focus. However, if I have a migraine, I don’t expect them to bend over backwards and allow me to camp out wherever I please until I recover.
That is my responsibility.
This, of course, does not apply to anything that falls under the Americans with Disabilities Act (ADA). If you have any concerns about service animals, wheelchair accessible areas, etc, feel free to contact the event staff! They will be more than happy to comply! With this in mind, if you have some sort of necessary accommodations that fall under ADA guidelines, contact the event staff and ask about such specific accommodations in detail. The people who run conventions and other such events are not psychic and cannot predict every individual need for every possible disability that may or may not be present at their event. For example, if you suffer from Epilepsy or seizure disorders, you may want to ask about what lighting is used in the dances, and if they have a policy about strobes. As someone with Chronic Migraine, I struggle with strobe lights, but when I am managing the Main Events room at Omni, part of the schedule includes a rave-style dance. Typically, strobes are a staple. Since this is usually the last event of the night, I can get away with slipping away not long after it starts (a perk of having one of the co-owners of Omni be the DJ and Tech Chief!). I don’t expect him to not use strobes in my presence, or to make the music softer while I am there. I make myself scarce and go to bed.
❄️Note: Omni is a unique event. DJ Shadowfax hosts a signature event called The Blackout Rave where strobes are a common accent. Since he has many friends who have seizure disorders and since I have Chronic Migraine and photophobia, he starts the event with a “strobe-free” period. This is a special case, and should not be expected at every event! This is his choice!
Just remember that it is your responsibility to know what is in store at an event!
Now, back to the planning! You should be prepared in case of practically any circumstance.
🐰 Include Trusted Friends in Your Plans – I emphasize “trusted” for a reason. I have heard many a horror story about so-called “friends” abandoning a sick comrade, or making a situation worse. I’ve even witnessed it! Out of respect for involved parties, I won’t go into detail. Just make sure you can trust the people you are attending the convention with explicitly. Do they understand your illness? Can they help you in the chance that you are unable to help yourself? I went to school with a girl who was diabetic, and she had a friend who knew how to reapply her insulin pump when it came out. When it was dislodged on a field trip, the friend stepped up and helped her. This is what I mean by including friends in the plan. If no one was able to put the pump back on, there could have been problems. When I have a migraine attack, I know my friends will make sure I am taken care of without coddling me.
🐰 Have a Medical ID (if necessary) – I know medical ID bracelets don’t work well with cosplay. I get it. Just make sure that you have some sort of medical ID on hand in case of emergency. Now, if your condition doesn’t require identification, don’t worry about it. Paramedics know how to access the Medical ID on an iPhone, too! So, make sure yours is filled out! There are plenty of options out there for carrying medical identification on your person. Wallet cards can be easily carried around, Dog tags for service animals, or to attach to your bag. They have high-tech bracelets, now, too! Perhaps a charm can be incorporated into your costume? The sky is the limit! This is imperative in case you are alone.
🐰 Bring Everything You May Need – And I mean everything! Medications, snacks, sunglasses, water, everything. I am big on the concept that it is better to bring something and not need it than the reverse! Concessions at many venues is incredibly expensive (this is no secret), so you aren’t going to want to stand in line to pay $5 for a bottle of water.
🐰 Okay, Something Happened…Now What? – All right, say you have an attack/flareup/whatever term is relevant to you and your situation. How do you handle it? Are you able to handle it, or do you need help? Refer to my example from before about the two friends and the insulin pump. They knew what to do. I had a friend in school who would have seizures/convulsions. When it happened in class, I jumped up and pulled desks away from her to keep her from hitting her head until the episode stopped. If you are coherent enough during an attack to give necessary instructions, do it, if not, does someone know what to do (refer to the first point)? The big thing is to know not to panic, and that your friends know this. If they stay calm, everyone else will, too. If they panic or start barking orders at people, it will cause dissension and chaos. Is calling for paramedics necessary*? Do you just need a few minutes and you will be okay? If your condition is something that can be easily concealed from others (like my migraines), have a friend walk you to your hotel room, or to an area where you can relax and recoup.
As far as I am concerned, these items I listed are the most important. However, it is important to understand that you are the one most responsible for you. It is not the convention’s responsibility to make sure you eat, or drink water, or get enough sleep. It is your job to take care of yourself. It helps to have a support group of trusted friends around, but you are still your own boss. As I said earlier, the convention staff (often only a handful of individuals) are responsible for everyone attending their event. They can’t be expected to know the specific needs of every single person. They are also not going to know how to help you if you contact them about accommodations, but don’t tell them what those accommodations are in order for them to see what they can do for you (if anything can be done). Do not hold it against an event or its staff if they don’t bend over backwards for your needs.
They are already bending over backwards to make the event happen!
Conventions are a lot of fun, and you know better than anyone how to keep your chronic illness from putting a damper on things. It is up to you to know what to do in the case of an emergency or an attack, and you need to make sure that there is a plan.
Stay tuned for Part Three!
💖Hearts and Sparkles!💖