The panel was “What Are You, Sick?: Chronic Illness and Cons,” and was basically about managing chronic illnesses and conditions while still attending events, like a convention. The Manly Battleships team consists of Streak, Rockstar, and Panda, and this panel was primarily hosted by Rockstar, with much of the additional input coming from Streak.
Rockstar began by saying that she was not going to suggest cures or pseudo-scientific solutions but wanted to give suggestions for anyone who had a chronic illness but still wanted to have fun. She said that this panel is always a work in progress and that she’s always open to suggestions to work on it or work new information in. She also said that this panel would be good for sufferers, caretakers, and anyone who attended conventions in general, for etiquette purposes.
Rockstar had also been referring to the audience as spoonies when she began, and next explained what the terms spoonies and chargies meant. The term “spoonies” came from a blogger with lupus, which described healthy people as having many spoons, whereas someone with a chronic illness has a more limited amount of spoons to complete their daily, weekly, or even monthly tasks with. Chargies is a similar term, describing those affected with chronic illness as people with faulty batteries: their batteries may only start at 50% charge in the first place for their daily tasks.
Then things moved on to convention details themselves. Pre-con advice covered reminding people to save their spoons, plan their clothing (comfortable clothes for travel or for days with flare-ups, and ideal clothes if you’re having a good day) and make sure they’re well supplied on medicine and other related items. Items such as a list of medications, allergies, diagnoses, and even things like Ben Gay or peppermint oil are good to have on hand. Comfort items like heating pads, canes, and comfortable walking shoes are also important.
Rockstar also took this time to remind attendees that they deserve the right and freedom to do what they want despite a disability or diagnosis. She said that using something like a cane could help, even if you’re having an okay day because people will be able to “see” the disability. This came up again later when discussing how poorly people react to someone using accommodations like handicap parking places that don’t “look” the part.
Rockstar also gave advice on how to navigate a con. For starters, she recommended backpacks over purses because they distribute weight better and usually have “comfort straps.” She also recommended being very clear about your needs–rather than saying, “I should sit down,” say, “I need to sit down in fifteen minutes.” She said these clear timestamps were important. She also reminded attendees that it’s okay to rest and it’s okay to say no to activities if you have to.
Checking con schedules if available ahead of time to delegate your spoons is important, too. Rockstar said she ranks events based on things she absolutely must attend and things she would like to attend but would be okay to miss if necessary. She added that of course problems always happen at cons, and it is okay to go back to your hotel room and rest and recharge. She said it might also be a good idea to pack something soothing you enjoy doing to help relax. She also recommends always packing a swimsuit just in case a hotel has a hot tub or a bath would help with pain and relaxation.
And speaking of those con problems, there will be times you can’t get away from a situation. Rockstar says that when her anxiety is bothering her but she can’t exit the situation, she will hum to herself, or put on her headphones and listen to a specific song to help her calm down. She also thinks of her anxiety attacks as colors and imagines changing them to calmer colors–from red to blue, for example.
Rockstar then moved on to advice for caregivers and friends at cons. Even just checking in to make sure a friend is feeling okay or has eaten is huge. Active listening is also an important skill: repeat a friend’s words back to them can help both of you make sure you’re understanding the situation. General knowledge of an illness or condition can also be a big help. And if you’re not sure how to fix a problem, talk the others. A problem stumping you may be solved easily by just having one more brain in on the conversation. Many conventions will also have accessibility staff on hand to help out. It’s also important to understand that a friend with a chronic illness may not always need you.
Another important thing to remember is that caregivers have needs too. They can get burnout as well, and become depressed or irritable. Rockstar said people with chronic illnesses have a “grieving process” where they realize and cope with, the fact that they can’t do as much as they used to. This can happen to a caregiver as well.
Caregivers are allowed to take breaks, too! Streak is Rockstar’s caregiver and sometimes takes time to do things alone at the conventions they attend. He said that he also attends at least one con a year without Rockstar to take a break.
Realizing that as a caretaker, you can’t be perfect, is important as well. As is using straightforward “I” statements to describe frustration can help diffuse a tense situation. And caregivers must remember that they can also ask for help.
Rockstar then gave out some general miscellaneous suggestions for friends and caregivers. She said not to give out medical advice, even if you mean well, unless if you are a certified medical professional. It is irritating. There is also a phenomena Rockstar called “disability Olympics,” where sufferers will try to top one person’s situation with their own. Not only is this frustrating, but it is also important to remember that everyone’s experience with a chronic illness is different, even when two people have the same diagnosis.
She also recommended that people be aware of their health and try to monitor that to avoid “con plague.” Even a simple cough that spreads around a convention is just one more thing to worry about. She also recommended that people not be pushy when they’re told no. If someone with a chronic illness is saying no to something, they may not be able to do that thing or are concerned about doing that thing, or just don’t want to do it. And that’s fine, an explanation is not owed.
Rockstar finished up with just a few quick points before she opened the panel up to questions from the audience. Situational awareness at a convention is important, especially when props are involved. New con friends are allowed to be interested in someone’s condition, but nosiness is rarely appreciated. Personal music playing over personal speakers can be overwhelming to folks on the spectrum and migraine sufferers. Scents, good or bad, can affect people negatively as well. And finally, Rockstar discussed elevator etiquette: don’t ride the elevator up just to go back down, let people get on the elevator get off safely, and let people get in it comfortably.
All in all, the panel was one of the most informative I’ve ever attended, with great advice for both con-specific situations and for life outside cons. As with the Manly Battleships’ David Bowie panel, it seems this panel is run regularly, with variations at different cons. I would definitely recommend attending this panel if you have the opportunity. You can check out the group’s scheduling on their Twitter or Facebook pages.
You can also check out Rockstar’s Facebook group “Handiweebs,” which is meant to assist those with chronic illnesses at conventions if they need something like a comfort item they’re short on, or want information about the accessibility of an event’s venue, or are looking for advice in general.
Connecticon XVII ran from July 12 through 14 in Hartford, Connecticut. For more coverage of this event, keep on checking N3rdabl3 throughout the week!