eczema as a chronic illness
over the holiday season i experienced a pretty bad flare-up of eczema, this time on my face, as opposed to on my hands.
when i was a kid, my eczema was pretty much contained to my hands, with the occasional issue around my mouth. but in 2023, after one issue with prescription renewal for my topical steroid, it spread to at least half of my face in a huge circle around my mouth, around my jaw, all the way up my cheeks, and circling my eyes. my hands were very similar, swollen and itchy all the time. it was incredibly painful, it burned and peeled, and ruined my self-esteem and a potential romantic relationship i was pursuing at the time as a 19-going-on-20 year old.
finally, i made an emergency phone appointment with my doctor and was prescribed stronger steroids, an immunosuppressant, and a new regimen to clear up this flare. it worked and i basically worshipped topical steroids for the next few weeks because of the instant relief. however, i now regularly experience face eczema, something i never dealt with as a kid.
when you have a skin condition on your face, the part of your body that is the most crucial for social interaction, a fundamental aspect of being human, it feels all-consuming. you are constantly terrified that someone will ask – what's up with your face? or what happened? or even just look at you funny. don't even get me started on the constant fear in the back of my mind that one day I'll develop topical steroid withdrawal (TSW) and there will be no relief.
after my big flare up in 2023, i remember filling out one of those demographic surveys where they ask if you identify with having a chronic illness for god knows what. they list some of the examples of a chronic illness to help you decide and often times will have you select which illness from the list you have. in my head i listed all the things i could think of that were "wrong with me".
this prompted me to google – is eczema a chronic illness?
most of the mayo clinic or eczema society of canada webpages described it as a chronic condition or inflammatory disease. but not a chronic illness. so what is the difference between a chronic illness and a chronic disease or condition? should i be filling in the other box on those surveys and writing in atopic dermatitis?
well of course not, because it could never be considered nearly as debilatating as chron's disease, or heart disease or anything that is typically on the survey list. it doesn't prevent me from my daily activities, my schooling, my part-time job, or –
well i have been so self conscious i wanted to stay home from any in-person classes, work, or social activities that jeopardized my personal relationships. and i have forced myself to suffer at any overnight required activities because i'd rather deal with pain the next day than show everyone my excessive nighttime routine. and when i have a flare-up i do try to keep my distance from people so they can't actually see my skin texture? does that qualify as disrupting my daily life?
on the eczema subreddit, most people agree that atopic dermatitis is not considered a "real" chronic illness. that it is not "life-threatening" and it's usually mild enough to not be considered a chronic illness.
but i remember the infection i got on my hands in 6th grade that required a course of oral antibiotics and the peeling i experienced to the point that i thought i could see the bone through my flesh.
thankfully, i have not had an infection like that since, but should that not be considered "life-threatening" if not appropriately managed?
i remember the frustration i would get as a child when other kids would try to compare their bouts of dry skin, saying "oh i have eczema too, see this patch? it's been bothering me so much" when it was a one off experience. that is NOT eczema. or at least it is not atopic dermatitis (there are other types of dermatitis that can be more temporary and environmentally influenced and don't involve a fundamentally compromised skin-barrier).
the public perception of eczema seems to be a temporary condition of dry skin that actually can permanently go away with some stronger creams or the occasional over the counter steroid cream. and for someone who is usually pretty good at managing the condition, i feel like i perpetuate that perception.
"your hands look good today"
something i would always hear my parents say. thanks! i didn't change anything out of my normal routine from the last time i had a flare-up, i'm just in a healing stage right now. don't worry it'll get bad again!
the concept of admitting that a condition you've become accustomed to and dealt with as a part of daily life IS a chronic illness is very vulnerable. does having a chronic illness or condition or disease make you as a person... ill? what kind of a label is that to carry around. by checking the box on that survey am i admitting that i'm damaged goods? or am i admitting that i'm weak and i think that my relatively mild condition is worthy of sympathy, or pity, or both. can i really put myself in the same box as someone with multiple sclerosis????
the obvious answer in my head is no. i fundamentally do not need the same considerations as people with multiple sclerosis. but i am actively working to understand my relationship with defining your "illnesses" or health conditions and how they should be impacting how i perceive myself.
i find myself critical of a lot of people i see online that let their diagnoses dictate their entire lives, personalities, and sense of self. to me, a person should always be more than their chronic conditions. but if your entire experience (or even a significant portion of it) on earth has been dictated by this... thing... then how could you not consider it to be a fundamental part of who you are.
i don't think i will ever select the chronic illness box on any of those demographic surveys, because i am nearly positive, that since i have not yet had to invoke any special accomodations because of my eczema, that it is not really relevant to the people collecting the demographic information. or maybe a small part of me still believes that i will "grow out of it", just like my doctor used to say when i was a kid.
clearly, i still have a lot of growing to do. acknowledging that my life experience does include, and unfortunately, will probably forever include, dealing with this condition, i should probably grant myself the title of having a "chronic illness". but just like public perception for the rest of the world, that might take a while.
as a person with a deep and strong belief in science, i truly cannot wait until the day that we understand eczema the way that we understand other conditions. i like definitions! i like black and white answers! i wanna be placed in the neatest and most easily understood box! sue me!
i am also incredibly inspired by eczema content creators like jada jones, that i have come across. watching their stories has really changed my perception about the condition. yes, plenty of people have much more severe cases, and i am eternally grateful for my manageable condition, but my life is still very different from the average beauty influencer.
p.s. representation matters! even seeing mikayla matthews on secret lives of mormon wives has helped me feel more "normal"
if i can figure out how to allow interaction on this blog i would love to hear others thoughts on dealing with "chronic conditions/illnesses" ranging in severity, labels, and self-perception.
with love and good skin vibes,
Lauren