This is inspired in part by something going on in real life, that I will not talk in detail about here, because it’s not my thing to talk about, though it is affecting me in a way. It will be vague – but unless you know me in meatspace, it is certainly not about you. It is vague out of a desire to respect someone’s privacy, not out of any desire for passive-aggressive sniping.
Life with my chronic illness is not:
- A blue puffer and I’m fine
- Being unable to do anything physical
- Being able to do a spur-of-the-moment tirp
- Wearing perfume without worry
- Just laziness
- Or just anxiety
- At all like breathing through a straw
- Finding someone else’s perfume merely strong (my lungs wish it, though)
- Having pets
- Looking like this (link to image of a blond Caucasian boy of about 6-8, sucking on a blue puffer with atrocious inhaler technique)
- Or like this (link to image of a brunette Caucasian girl of about 4 or 5, sucking on a white puffer with atrocious inhaler technique)
- … Or seeing anyone even remotely resembling me in pamphlets or brochures about it (all asthmatics, apparently, are small children or senior citizens. Young adult asthmatics? We don’t exist, apparently).
Life with my chronic illness is:
- Feeling erased by “educational” resources.
- Knowing that as erased as I feel, it’s probably worse for Asian, First Nations, Hispanic, or black asthmatics, who likewise seem forgotten by most “educational” resources.
- Fearing insurance fuckups.
- Spending a quarter of my pay each month to keep myself breathing… and feeling fortunate I have good insurance so I only have to spend that much
- A special trip to the drug store the last day of my insurance coverage before I start a new position, to make sure I have enough meds to last until the insurance people get the paperwork sorted
- Solving the source of mystery exhaustion when I take my peak flow and realize, holy shit, my lungs are 40% blocked.
- Looking bored when I’m having a flareup (little-known symptom: Yawning).
- Looking sick when I’m having a flareup (cough-variant asthma: it exists)
- Having people yell at me for spreading illness in a public place when I’m having and trying to treat a flare-up (again, cough-variant asthma: it exists)
- Trying to explain to an ER doc between coughing fits that cough-variant asthma exists and that’s why I’m not wheezing
- Fearing when I get bad enough to go to the ER, because since I’m an athlete, my “Really sick” numbers are what is supposed to be my “Normal” – and I have yet to meet an ER doc who realizes that predicted bests are averages, outliers exist, and I’m one of them.
- Knowing that being young and female means that I have to do my best to act calm and unruffled, lest the doc write me off as anxious, even though anxiety when you can’t breathe is perfectly normal.
- Getting told I need more willpower when I’m treating my illness
- Feeling judged when someone remarks that they “don’t like” taking medicine when they see me treating my illness, and resisting the urge to snap back, “Yeah, like I do it for shits and giggles.”
- Having others presume me physically incompetent even on good days…
- … and then when I’ve finally convinced them I can do stuff on good days, judge me as lazy when a bad day means I can’t.
- Planning my budget around making sure I have enough for my medication and to treat any flare-ups.
- On bad months, playing “which bill can I not pay?” in favor of getting meds so I can stay healthy.