It has been 6 years (more or less) that I have been dealing with what seems like severe skin issues. When this all started in 2013, no one knew what was happening to me, and various assumptions were made. My mom strongly believed the cause to be that the off-campus housing I was living in was too dirty. My dermatologists thought it was from improper skin care. My doctor thought it was from a staph infection. My specialist thought my symptoms had a hormonal component and the likely cause was my birth control pills or the pituitary adenoma they found on an MRI of my brain. I thought it was from topical steroid usage.
But whatever the cause, the medical treatment has been about the same no matter who I saw (and see). I’m advised to moisturize more with different moisturizers and then prescribed rounds of antibiotics and prescription on prescription of topical steroids (and often oral steroids too if I’m looking particularly bad). The result has also been the same- some clearing up of the skin, followed by a precipitous dive into new flares as I taper off the steroids. It’s almost like my skin is addicted to steroids. What I mean by that is that because I have been applying exogenous (not made from my body) steroids for so long, my skin has adapted. So when I stop using the steroids (or at this point, when I start decreasing the amount as recommended) my skin, having slowed its natural cortisol production in response, suddenly can’t remember how to make enough cortisol. As the blood all rushes back to the skin, with it comes all the inflammation that the topical steroids had kept at bay. (Oh and as an aside, the reason people can’t stay on topical steroids forever is because it thins out your skin over time and can also make you very sensitive to sunlight).
With addictions generally, I’ve heard you can take one of two approaches: drop it cold turkey or reduce it measurably over time. Both types of approaches have been attempted with my skin. The research behind tapering when your skin is already addicted has been changing a lot and so every doctor has a slightly different plan about how to do it. Unfortunately, every plan results with me having worser flares from the moment I start the taper. It is for that reason that I usually opt for the cold turkey approach.
The problem with cold turkey is that I haven’t lasted more than 2 years. At some point I’ll eventually give in and go to a new dermatologist and they will scare me into using steroids and antibiotics again. One told me my organs were also inflamed because my skin was (this was said off-handedly when I mentioned my fear of topical steroid withdrawal. No tests were done to confirm such a statement). Another said my choices were steroids or cyclosporine (an immune-suppressant given to patients getting organ transplants so their bodies don’t reject the new organ. To be on them requires kidney function monitoring, and your ability to fight off things like the common cold is reduced). Another said that skin regenerates by every 3 weeks so there was no way my skin would still have issues with tapering off. And yet another said I should just use topical steroids as needed just on my rougher spots, but then gave no general instructions about how long “as needed” is, if the skin keeps flaring.
This isn’t a blame game towards dermatology (anymore: that was an older stage of grieving). At this point I am more interested in the cultural acceptance for myself and by others of this state of being chronically ill. I’ll be honest, it’s incredibly difficult to do for myself. I constantly think about how life will be if and when I heal, what things I’ll be able to pick back up, what things I’ll be able to try. But deep down I have to accept I might not heal. Lately, I’ve been banking on biologics (Dupixent) to save the day and I just keep being like “okay I’m breastfeeding now but once we’re done, so long as I don’t plan to have another child, I can go on these groundbreaking but experimental drugs.” I have to think about life decisions in that way because no one knows the effects of these medications on fertility or pregnancy, and if I use them I am not willing to take the risk. Harder still is that their efficacy isn’t even guaranteed!
As a result, I’m always forced to think ahead. So much of my experience as a first time mother has already been influenced by my condition. It’s not just dry skin. My body reacts like it’s allergic to everything, even to holding my baby’s head on my bare arms when breastfeeding. I always wear loose flannel over myself to not have that skin contact. I can’t give my baby baths as easily because my hands freak out from that kind of water exposure (washing my hands in general makes my hands itch like crazy and sometimes break into hives). I can’t do crazy sweat-inducing heat-generating workouts as easily without needing breaks to let my skin cool and dry off so I don’t scratch myself to death. This also means carrying my baby strapped to my body on a warm day eventually makes my stomach flare up. I am becoming increasing sensitive to new allergens, like developing allergies even to my childhood dog and a lot of my friends’ houses.
This condition also impacts my ability to sleep. Sometimes I’m kept up at night by my baby, but often times it’s my condition that does it; my skin going through thermoregulating issues or being triggered by friction, sweat, air temperature deviance, my husband’s body heat, stress, etc all irritating my body so I am either scratching or my skin is heating up and weeping, or cracking as it dries out. It’s a never-ending battle to not fear going to bed though I know I need the sleep, because I get so nervous about how uncomfortable the night will be.
And then all the while that I’m slowly learning to accept my own condition as a state of being, I have to figure out how to validate myself to the world. The most common attitude I receive from others is that I am just negligent in using moisturizers, which results in a lot of product recommendations from coconut oil to castor oil, Eucerin to Aquaphor. The challenge is getting people to realize that it’s not just a dry skin issue. I often have sporadic allergic reactions to products (no matter how natural) because it’s an autoimmune issue. Over the past few months I have reacted to coconut oil, and then vaseline, and then vitamin E oil. Now all three are fine to use.
This condition also impacts what I can eat. I once had a date (the fruit), and immediately broke out hives all over my lips. This happens with foods I previously could and will again be able to eat. The reason is because my issue is internal. The skin is just an unfortunate symptom. And yes sure, if I can consistently figure out how to keep my skin closed (no weeping or open wounds) maybe my other symptoms will slow, but my skin didn’t flare up one day in 2013 in a vacuum; something else triggered it.
The next challenge I face is convincing people that this is more than skin deep. I have had people tell me that eczema (the blanket term for having rashes like mine anywhere on your body) is not an autoimmune disorder. One, it definitely is, and two, when you get to my severity level (aka chronic and where the whole body is affected) you have to recognize something else is at play. My eosinophil levels (a type of white blood cell) are often off the charts. I’m talking 6000 units when normal is 60. And again my inner mouth and throat aren’t affected by eczema yet they break out in hives fairly randomly. My digestion also can get messed up at a drop of a hat and I often know I’m in a healing phase when I have bowel movements again. Not to mention joint swelling and swollen lymph nodes even in regions of my body where the skin is intact. My body’s immune system is definitely overactive.
The next issue comes from dermatologists. I honestly don’t know why I keep expecting a different plan of care, as their profession literally meaning the study of skin, but I’m always bummed when they come at me from the approach of only how to fix my skin. Like I said, the problem is my skin isn’t the cause. So if they just give me meds for my skin, I finish the medications and the symptoms return because the cause hasn’t been found and treated.
All this is to say that finding a way to accept my life as it has become, and getting others to realize what it’s like has been difficult. I’m naturally a very anxious person, and the rapid onset of this condition followed by years of being a “medical mystery” and now basically a non-compliant patient (at least towards any derm that recommends steroids yet again without having new scientific evidence proving efficacy in case studies similar to mine) have made me quite wary. I don’t have good faith that people will understand what it’s like or why I am constantly reinventing my future. Why I constantly change my diet. Why I adopt these “hippie” approaches to skin care like refusing topical steroids or going moisturizer-free during wet flares. I’m not trying to be difficult or ignore medical advice. I’m working to figure out this body I’m in as it is, and treating it gently as I re-meet it and get to know it, accepting that yes, I may now always be chronically ill even though I still remember a time when that wasn’t the case. And yeah maybe there will be a cure and/or I will heal one day, but until that time I have to meet myself where I’m at now.
Hey, if what you read seemed dated or familiar, I’ve been combining all my other blogs’ content to this site. Please bear with me as I post older content. 🙂 This post was written April 2019.