I don’t remember being diagnosed with asthma. I don’t remember being diagnosed because I was very young. I know by the time I was 10 years old I was doctors-note exempt from any physical fitness activities that made me feel sick and had to be sure there was an inhaler in my backpack at all times. This was coupled with my increasing susceptibility to common colds turning into horrible coughs that lasted weeks and were so loud and disruptive I couldn’t be in school, bronchitis, and occasionally what they call “walking pneumonia” assumedly because you can still get out of bed with it, though that was not always my experience. By 14 years old I was home schooled due to my inability to go to school for various health reasons.
My asthma sometimes feels like being strangled from the inside. Other times it feels like a hippo sitting on my chest or like slowly drowning in a pond or like I’m wearing a corset that’s too tight. It’s triggered by allergies, by physical exertion, cold air, humid air, and barometric pressure. One time I had to call an ambulance due to taking a warm bath.
The general public’s understanding of asthma is that it’s a mild inconvenience or a once-and-a-while issue, and that’s what you’ll see portrayed in most fiction. This is likely because the larger percentage of children with asthma “grow out” of it, with symptoms lessening as they reach their teens and early 20’s with only occasional recurrences. Even other asthmatics tend to push this idea, because they think that their asthma experience is universal. I’ve multiple times this year come across asthmatics proclaiming their dismay with the portrayal of asthma in fiction while simultaneously ignoring the experience of those of us in the severe category and further spreading misinformation. It’s like someone with a missing toe claiming to know what it’s like to lose a leg. (Please, other asthmatics, stop telling everyone that inhalers make you shaky. One beer doesn’t make everyone black-out drunk. Your tolerance is not my tolerance.)
Even worse are the number of first responders, nurses, and doctors that have no clue how to treat asthma. Imagine being unable to breathe to the point where your vision is narrowing and some dudes are having a chat and telling you to “calm down” instead of administering life-saving treatment. More times than not, medical professionals have been ignorant, dismissive, and neglectful to a dangerous degree any time I’ve been in an emergency situation.
I didn’t grow out of it. The older I’ve become, the sicker I’ve become. Allergy tests in childhood showed I was allergic to nearly everything they tested for. I was given allergy shots every 2 weeks that would make my arm swell up to the size of an orange. After almost 2 years of that, I demanded we stop because they were clearly doing nothing to help me. Other sorts of allergy and asthma medication were attempted without result. I was supposed to monitor my breathing, but for no real purpose because my breathing was always bad. Might as well have called it a no shit meter.
Albuterol (Salbutamol, it’s variants and generics) is the standard medication for all asthmatics, and has been for as long as I’ve been alive. It is what is called a “rescue inhaler”, meaning it acts immediately to open your airways. Kind of like an epipen, except you breath it in instead of stabbing yourself. I currently use a rescue inhaler about 3 times a day in addition to other “preventative” meds. (That don’t do much but I like to at least prove to my doctor that they don’t do much by taking them.) Steroids are no longer an option even though they are very effective at helping with asthma symptoms because they are dangerous to take long term, and also I get a terrible rash on my face from them that takes many weeks of antibiotics to get rid of. Nearly all of my asthma management comes from access to albuterol.
There has never been a good reason for albuterol to be prescription-only. You cannot get high off of an albuterol inhaler. It is less dangerous than aspirin or benadryl. It is simply a way for drug companies to continue to make horrific profits off of sick people.
The US attempted to kill even more asthmatics by banning Primatene for nearly a decade. Primatene is the only over-the-counter rescue inhaler that exists in the known universe. It is, in fact, much more dangerous and harsher on your system than albuterol. Back to the epipen comparison, all rescue inhalers function as an epipen functions as both are for instant relief of symptoms. Primatene is literally the same medication as what’s inside an epipen (epinephrine). Inhaling it is unpleasant, but it is the only option when you don’t have access to doctors. I had to survive on these for many years, as my health insurance ended when my mother lost her job by dying when I was 17 years old. I only sporadically had access to health care throughout the years following, and mostly I had to survive without which meant multiple near-death hospital trips a year.
I was still relying partly on Primatene until late 2019, when I moved (fled) to France. Here, without insurance, a doctor visit is $40, where you will get a prescription that lasts for a year, and albuterol costs $5 US. Even before I could get to a doctor, I went to a pharmacy with just an empty inhaler, and they sold me one. Multiple times. In the US it would cost me $80-$120 to get a 30 second phone call with a doctor who would only give me a prescription for 2 or 3 inhalers, and one inhaler costs as much as the call with the doctor. Though I’ve been in France for 18 months now, I still feel a wave of amazement when I pick up inhalers from the pharmacy here.
Unfortunately, Covid-19 decided it also wanted to go to France (and also everywhere) just a few months after I arrived. Hopes of making progress on my health needs (I probably need 100 hours of dental work, and that’s just one of many, many parts of me that have been neglected for over 10 years) were dashed, as it is ironically too dangerous for me to go to a doctor right now. I’ve been in severe isolation for over a year now. Having your lungs constantly failing is traumatic enough, coupled with the rest of my PTSD and this past year of lockdown, it’s a lot.
I had hoped that, with such a robust health care system, the French people would take a plague seriously. Unfortunately, it’s just like the rest of the world where anytime you go out on a errand, you are forced to be around people who want you dead. It’s very, very dangerous for me to go anywhere near other people, of which many are unmasked and actively take steps to make situations more dangerous like closing windows on trains.
With the severity of my condition, I am considered extremely high risk. Or rather, you’d think I would be. But not in France. Asthma isn’t on the list of reasons you can be prioritized for a vaccine. People with chronic lung dysfunction aren’t a priority to be vaccinated for a disease that causes lung dysfunction. Way to go, France. It will probably be another few months before I’m eligible unless I sneak in on one of waiting lists for unused doses.
I’m still in a much better place all around being in France verses the US right now, despite our lack of vaccines. I have no intentions of ever returning to the states. I haven’t ended up in the hospital because I have access to medications that keep me at least partially breathing. I could be doing much better, but in America I’d be doing much worse.
