Published On: Feb 25, 2019
Last Updated On: Feb 25, 2019
My history with eczema is pretty standard and easily embodied by the following points: mild case as a child -> gradual creep towards worse flares -> prescriptions for stronger topical steroids over time -> topical steroid withdrawal induced -> unsuccessful steroid tapers -> living life steroid-free -> learning to manage.
Previously, I was on track become a Doctor of Physical Therapy, but as my skin worsened, my mind bounced around to escape the trapped feeling of my skin. Instead of focusing on class, I kept coming up with more and more ideas of how to use my skin challenges as catalysts to move to a new direction in life.
Eventually, I hit my breaking point and decided it was time to move on to this hypothetical mental model of life I had envisioned. Since that jump, I’ve learned that I can find a voice, not only to bring awareness to this condition, but also to help others understand what eczema is and isn’t (especially explaining that there isn’t a one-size-fits-all solution).
I have learned to relax more, to appreciate the good days and be more in tune with both my own emotions, as well as acknowledging temporal aspects like seasons and weather, which ground me more in this life, as opposed to my previous hustle-and-bustle, run-my-body-into-the-ground approach.
I have also learned to be more flexible, to accept changes of plans and be able to explain my limits as they come up, but also to be able to adventure and try new things like deciding to fully commit to becoming a writer, and deciding that now was actually a good time to start a family.
I have learned to develop a sense of whimsy about living with eczema. I accept that I will create skin regiments and have them down pat, but then a new sensitization, a random contact allergy, or the weather will completely derail it and have me running back to the drawing board.
I can laugh about the fact that I sometimes live in the bathtub. I set up a stool for my laptop to watch movies. I bring hot teas to place on the bathtub corners for peaceful olfactory sensations and internal warmth. And I have collections of various concoctions that I use to soak in.
I have learned not to hide. On bad days when my skin is raging and I feel ill, I understand that it is time to hibernate and be gentle. But when things are not so inflamed, I push myself to go out and show the world I’m still here and still going strong.
I create routines that allow me to go to my happy places, like walks to the library to exchange books, or drives with my husband for grocery shopping, bringing along our wee babe in the stroller and socializing with people who inevitably want to come over and interact with her.
I visit my neighbors, make time for outdoor things like gardening and refuse to let myself cancel plans with friends, even if I worry about my skin being triggered by pets, foods, dust and stress in environments I can’t control.
I cover up my skin, just enough to stay warm—not because I worry about what people think of my reddened, flaky, wrinkled appearance. I unapologetically embrace myself because I know there is nothing to hide.
I have learned to credit eczema for some of the good things in my life:
- The strength and open communication of my relationship;
- The catalyst for having a now 4-and-a-half-month old;
- The push to press on to new career dreams;
- The pull to slow down and enjoy the good moments;
- The self-forgiveness for not always finishing things on time and needing to go at a slower pace;
- The gentleness and introspection to know that if I have this whole new life because of a condition, it is very likely others have their own equivalents; and
- The confidence to find my voice to work to become an advocate, and to proudly live despite my skin’s appearance.
I won’t say that I am happy that I have eczema (or anything so cavalier), but I will say that knowing how my life turned out, I wouldn’t change the past even if I could.
There’s no need to hide: Lessons from a lifetime with eczema