I identify as an EDS Mama and have for a long time. I’ve always known I had to practice self-care and encouraged other moms with chronically ill children to do the same. Unfortunately, I haven’t been very good at doing that myself. As my daughter who has EDS grew into a phase of self-management, I thought that this would be my time to finally take care of myself. I had neglected myself for many years so that I could take care of others. No sympathy wanted, just matter of fact.
It was a nice thought that I would finally nurture myself a bit now that my child was older, but I had started a bad practice years ago that just continued by spilling over into caring for still other individuals. Now don’t get me wrong, I’ve always worked on my own nutrition and tried to re-discover hobbies I once enjoyed. But it was just enough self-care to keep me functioning. I think what I’ve neglected most is my mental health.
During the Covid-19 pandemic of 2020, I was very diligent in wearing masks and using hand sanitizer to protect myself since I have systemic lupus. I often sent my husband to do the grocery shopping for our family. After about a month of using the paper type masks for times I just had to wear one, I developed a rash around my eyes. Preceding this, I had also totally changed my diet to plant based, no sugar, no gluten, very low inflammatory, so I wondered if the rash was a purging process in my body. I had re-started a nutritional and skincare consulting business right before this and I was excited to have something just for me. Eventually, under our governor’s orders, we were forced to work from home and I enjoyed a slower pace, finding time to take daily walks (mostly in the full sun of the afternoon). The pandemic was a very stressful time for running businesses which were mostly shut down and there was so much that was new to learn and implement. It was very taxing for many people, including for me. Eventually our state re-opened which meant I transitioned back to the office setting. I did not expect that this would be so difficult, but the stress of too many responsibilities on my plate beyond work was beginning to take a toll. My personality has always been one to step up and get things done, to always put the needs and requests of others above my own.
When the rash around my eyes did not go away, I finally made an appointment with a dermatologist. Immediately upon entering my examining room, the doctor said she had seen multitudes of other patients all with the same “dermatitis” caused by hand sanitizer and facial masks. She gave me a steroid cream and I went home to work on making a less irritating cloth mask. The rash cleared up within days, however when I discontinued the steroid cream, the rash came back with a vengeance around my eyes and continued to spread down my face, neck, and ears. My skin itched and burned all at the same time. If I became overheated, I would feel a prickly sensation, more of the rash would come out, and the burning would begin. It actually felt like my face was on fire at times. My face and eyes appeared puffy and my eyes felt irritated, burned, and were goopy with drainage. I had quit wearing all makeup because the doctor had said if the rash came back, I could be reacting to something else and I would need further testing. I discontinued all the skincare and nutritional products I was currently using for fear this was an allergic reaction or worse, auto-immune triggered.
I was feeling very self-conscious now with how I looked because there was no hiding my condition. I worried about how others would view me in the work setting and I started to avoid requests from friends to get together. I was discouraged about my nutritional business. Where does a person with lupus and skin like this fit into a skincare business when I can’t even use the products? If I can be honest, I was depressed.
I made a second appointment with the dermatologist and at this visit, the rash had changed on my cheeks which were now covered with small pustules. I’ve had severe cystic acne in the past and I felt like acne was just never going to leave. I agreed to a skin biopsy even though it might leave a scar because I needed to know what was causing this. The doctor was puzzled as this was very unusual with the predominant eye involvement.
I actually was not surprised when she called with the results to say I had rosacea and I also had eye involvement. Both of my parents suffered with this and many people who have had acne in the past will go on to develop rosacea. It is an inflammatory blood vessel condition with no cure. I was scared because the skin around my eyes had actually started to change to a rough bumpy texture. Would my skin be left with permanent changes?
Although rosacea can have multiple triggers including genetic factors, I believe my largest triggers were the sun (my daily walks), stress, genetics, and exacerbation from mask wearing. Hot drinks and spicy foods seem to have no bearing for me. I have always been very sensitive to the sun with lupus and, mentally, I felt like I was at a breaking point of doing everything for everyone else. I was stretched way too thin. I also believe that lupus played a part in the inflammatory process. Good nutrition and botanical skincare can be wonderful for the average person, but when the immune system goes overboard, these things can become triggers that just snowball.
This rosacea really was an eye opener to not only me, but to my loved ones that I was not coping well. The stress was written all over my face and it was begging attention. I do believe God uses things like this to guide us and to teach us. I'm thankful that I’ve developed a gentleness instead of judgement when I see someone without a mask during this pandemic. I’m still searching for a mask which doesn’t irritate my skin. Even a cloth one worn for extended periods causes my face to feel like it’s burning. I’m learning to feel comfortable around others with no make-up and it feels good to just be me.
I have a heart for you, EDS Mama. We need to be healthy. We matter, too. I hope that you will continue to join me as I share my Rosacea journey here which is part of growing old gracefully. Why put off any longer taking care of yourself?