I met Mary around two years ago on my Facebook page. Mary has Ichthyosis Vulgaris. But at the time we chatted, I didn’t know it. She was friendly, joined in on lots of discussions and offered compassion and the occasional empathy about skin pain. One day, when I was in hospital, she sent me a private message, offering gentle advice about my skin – the intravenous site to be specific. I had experienced awful pain around the cannula and Mary suggested an ice bag. I thanked her, but still I wondered how she knew so much about Ichthyosis. And so I asked her. She told me she’s in her mid 60s, a retired nurse, and she believed she might have Ichthyosis. We chatted a while longer, and soon after that, she went to the dermatologist for a diagnosis.
I’ll start with the confusion. My mom told me that two weeks after I was born my skin peeled in sheets. She was frightened and did not know what was happening. My mom was told to put mineral oil on to help keep my skin moist, but she was not given a name for the skin condition nor was she given any other advice or treatment schedule. Science had not come up with a name for my skin condition and the doctor was unfamiliar with it as well. I contracted a staph infection before leaving the hospital and my constant infections and bleeding skin kept my mom busy. The next few years were full of colds, eczema and allergic reactions.
Starting grade school was full of challenges and illnesses. My eczema was in full bloom and the elbows and knees were breaking out in angry patches of itch. A family doctor prescribed a black tar type ointment which needed to be applied and then wrapped in strips of cloth. The first day of treatment was done and I was sent off to school for the day. A huge problem ensued for me. Kids started laughing and pointing, the teacher was trying not to laugh while asking why I had such wrappings and black stuff on under the wrappings. The wrappings were falling off because they could not be taped to my skin. I was crying. It definitely was not my best day.
I went home and told my mother that I was not going to school like that again. I had been scarred by the experience. It was bad enough being coated daily with mineral oil and all the problems that went along with that. I was not going to wear rag-covered medicine again!
I found the summer heat to be so uncomfortable. Why was I always so hot when others were not. Why did I need the mineral oil even in summer? Windy days made things worse because dust and grime would cling to my oil-covered skin. Oh, and then there was the problem of eczema oozing and neighbors’ pets wanting to lick the wounds. Don’t get me wrong, summer was fun and I have plenty of fond memories, but I also had issues no one else in my circle seemed to have and I did not know why.
Unfortunately there was a lack of understanding within the family I grew up in. Acceptance of my skin and general health issues were difficult for some in the family. The constant cough, the flakey skin and the infections caused tension and impatience with some folks. I was called “fish scales” and told I was not clean and that was why I got skin infections so frequently, and I was lazy. I was told to stay away from certain individuals when I had a cold and shunned if I had an infection. You know that saying “What doesn’t kill you makes you stronger”? Well, I am all about it 🙂 Fortunately I had some individuals outside the family who were nurturing and caring towards me.
So much for the confusion growing up. High school was better. I was healthier and my skin on my face was actually getting compliments on how smooth it was. Wow! But my confidence was not strong and I had a difficult time trusting or believing people when nice things were said to me. The eczema was still a big issue but instead of being made fun of people were more curious or wanting to be helpful. Life was getting better. But I still strongly disliked the heat and would still try to cover up even in the summer to hide my skin. I wore pastel colors only as it would hide the flaking scales. The guilt of being different was not going away easily, but determination and the drive to be positive definitely were strong and getting stronger.
Romance and love arrived when I met my husband. After dating for a while he said he never noticed when I had mascara on or off, let alone anything different with my skin. He just saw me and my smile. Wow 🙂 We married and have four children and three grandchildren. So sweet!
Enter the fabulous age of being sixty-plus, computers, and even more dry and flaking skin. Searches on the Internet brought up FIRST. It was hard for me to believe that this organization really existed. I had to keep searching to believe what I was reading. More searches brought up stories of people with skin just like me! I was so happy to finally belong! Then I found Carly and the Tune Into Radio Carly blog. So. Much. Caring.! It still took me two more years to confront my dermatologist about my skin and a diagnosis. I had put all my symptoms together and I left my skin untreated before my annual appointment. I finally had conviction that I had ichthyosis vulgaris and the courage to demand to be heard. Yes, said the dermatologist, I did in fact have IV. I told her how great it was that I know knew there were people with the same skin. I also told her how I struggled to understand my skin, allergies and asthma. Now I had an answer and I felt empowered.
The relief of finding other people with similar skin is very liberating. I am very fortunate to have caring people in my life. It has allowed me to develop important qualities such as empathy and belief in myself no matter what. I am a quiet person but I am still curious. Guilt and confusion have gone away. I wear dark colors now and don’t care much if I am having a flaking moment. I would not change my experiences because they have all brought me to where I am today.
May is Ichthyosis Awareness Month – I am sharing stories of people who have experienced Ichthyosis. Read all stories in the Ichthyosis Awareness Month Blog Project here.