Life with my chronic illness

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.

4 thoughts on “Life with my chronic illness

  1. notesoncrazy says:

    I’m going to google cough-variant asthma to learn more about it (never heard of it, which it sounds like you run into a lot unfortunately, so I’d like to get educated). The internet can have weird and conflicting info on medical stuff though, especially lesser known medical stuff (I’m guessing you know that though!!), so if there are any sites or resources you know of that you think describe it well or say how to be supportive to someone dealing with it, I’d love it if you could point me in the right direction so I don’t end up on the wrong path.

    • ischemgeek says:

      Cough-variant asthma is a subtype of asthma that is symptomatic mainly through coughing. People with cough-variant asthma often don’t wheeze unless they’re having extremely bad (i.e. life-threatening) flare-ups.

      A common misconception is that cough-variant asthma somehow less severe or less debilitating than normal asthma. It’s every bit as severe as normal asthma, but it just has a different symptom profile. Another common misconception is that its “only” symptom is cough. It’s true that the main symptom is coughing – but I often have other asthma symptoms, such as chest tightness, prolonged exhalations, exercise intolerance, fatigue, and chest discomfort.

      A lot of people with CVA (me included) don’t show much change in our spirometry unless we’re in a very severe flare-up (in my case, this is because most of my obstruction is in my small airways, thus my peak flow is unchanged even if my FEV25-75 is depressed – I’ve had a 95% peak flow at the same time as a 40% FEV25-75. I had severe small airway obstruction, but my peak flow – what most ER docs go by – would make you think I was having no significant breathing trouble at all), and as such spirometry is a poor tool to measure our asthma control (measuring FEV25-75 requires specialized equipment that most people can’t afford – most patients can only afford a peak flow meter. I do want to get myself a portable spirometer, but I need to save up the couple hundred it’s going to cost me) – I monitor mine through tracking how often I have symptoms, how easy it is for me to exercise, etc. Because we can’t rely on “hard numbers” very much, it’s harder and more work for us to treat and control our asthma.

      Basically, CVA is asthma with a double dose of coughing and an extremely tiny dose of wheezing, if wheezing is present at all.

      • notesoncrazy says:

        Thanks for the info! I know realistically no one can be conscious of every single medical condition of every single person they run into, and I know that just because I’m aware of something or educated about it doesn’t mean I can necessarily help…but you never know. It can’t hurt to be more up to speed on something like this, right?

      • ischemgeek says:

        Yeah, I take the attitude of if others are willing to educate me great, otherwise I usually search the Mayo Clinic website (or NHS, if I think they’re using UK medical terminology) for info. But I think most important is being willing to accommodate others and accept that someone who says they’re not contagious really isn’t – believe me, I get that my asthma makes me sound like I have Bronchitis From Hell when I have a flare-up. So I’ll usually joke, “I’m not contagious, I promise!” Or I’ll grumble about asthma loudly enough that it can be overheard as a cue to others that I’m not contagious. I get why people would be worried that what I have is catching, but plz believe me when I say it’s not and don’t tell me to “stay home” when I’m sick since part of having a chronic illness means I’m kind of always sick, and so I usually only stay home if I’m so sick I can’t function or if I’m contagious.

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