Ichthyosis Vulgaris: My Struggles and Acceptance With “Fish Skin”

Hello, scaly, flaky skin. Once again, you have greeted me with your itchy wake up call this fine early morning. Not that you haven’t kept me up throughout the night, reminding me that it has only been a few hours since I slathered you in thick butter cream for feet and “hydrating” oatmeal and shea butter lotion.

I have lived with this itching, scaling, flaky fish-like skin my whole life. I’ve gotten to accept it as something cool when a certain friend took notice and thought it was cool. She said it was like I was one of the X-men. I was some sort of lizard girl. I thought “That is cool”. She even said I was lucky. Lucky? Ah, the grass truly seems greener on the other side when you haven’t lived in someone else’s shoes.

You see, I have had to actually struggle with it, of course. I mean physically struggle. You know how trees have bark? Okay, my skin isn’t as bad as that. But I can still, somewhat sympathize and I sometimes wonder if a tree is comfortable having thick, rough, hard outer shell. But, as my mom explained to me, that bark is what keeps a tree warm and protected.

My mom has lived through the struggle with me. She did raise me, mostly. She tried everything she could possibly afford. Never did she mention having to explain to anyone why my skin is the way it is. Nope. People just waited until I could talk and understand before scrutinizing and interrogating me. Anyways, I was soaked in Goats Milk, Aveeno Oatmeal, Epsom Salt, you name it. As long as it was available in her price range, she tried it hoping for the ultimate cure. Nothing. I think some remedies were temporarily soothing during the bath, but not after. Some products made my skin worse.

Mom started thinking it was what I was eating. She banned Kraft Dinner and other powdery, synthetic dairy products. White bread went out the window for a while. But that was my favorite kind of bread. Oh, the fuss I kicked up about it. I didn’t know any better. I was just wondering if other kids had itchy skin, too, and wanted to know why parents insisted on placing those thick, wooly, “fiberglass-like” blankets on the ground for picnics and sleep-overs.

When I went to school, I started noticing other kids had the most clammy, soft, unwrinkled hands with dimples in their knuckles. Why couldn’t I have hands like that? My hands were full of lines and wrinkles, all crusted with dead, flaky skin. I had long fingers and big hands.  I was a palm reader’s dream. No dimples, just pointy mounds for knuckles.Still am. I was always told that long fingers meant I was made for art. This is where I definitely blazingly shine. So, I have that going for me. But I was still very self-conscious about it. I didn’t have hand lotion with me in school, and I would think a logical solution to hide my dryness would be saliva. Sounds gross, I know, but I wasn’t think about it as being dirty. I would be sitting in class licking my hands and admiring, afterward, at how “normal” my hands looked. Of course, that didn’t last long. My hands continue to be dry and slippery. (Very hazardous on the bus when you have to stand, holding on to the metal pole and pray the bus doesn’t have to slam on the brakes, in which a couple incidences have happened as a result of just that. Just saying.) Rope climbing in gym? Forget it.

It wasn’t just my hands. My face was constantly flaking on my eyebrows and my nose. I would get asked why I have white flakes on my face. How do you even react to that? The question just seemed rude, even if asked out of genuine curiosity. But that was nothing compared to junior high. I didn’t get why, until just recently, why people were making up rumors that I was high and asking me, when I was upset about something, if I’m high. Most of the time, my skin flaked out on my skin and I wouldn’t even know it. I was putting lotion on my face and tried scrubbing it with a sandy apricot scrub. By midday, however, the effects of the “moisturizer” wore off and I would be left with a winter wonderland on my mug. During winter, I blended in quite well. Anyways, I know get the drug reference now….and I disdain it. I resent it. That is not who I am nor what I have ever represented. Despite what other people think, I know who I am or ever was. I think that was the most damaging thing that anyone has suggested regarding my skin.

My whole body was a mess. My arms were scaly and flaky. Sitting in choir back in Grade 5, a girl next to me had the gall to ask if I was handicapped. “Uh, no”, I replied. “Then why is your skin so dry?”, she snootily asked. “Because I was born with it.” Really. I don’t think people ask questions out of curiosity, sometimes. I really felt like she was bullying me. It wasn’t anything new. That was the basis in my childhood school years. But that is another story…

The summer was the best time. My skin would get a little better. Get a little tanner. To a point. I’ve come to love my pale skin and keeping it untanned because tan on ichthyosis vulgaris just emphasizes the scales in a weird way. My arms would look alright. But my legs. I have a love/hate relationship with my legs. They are tone and powerful. Bumpy, rough, scaly, flaky. Except for the inside of my thighs and back of the knees. Places where skin tends to meet skin, a lot. I have red, pimple dots all over my thighs. They never go away no matter how much you scrub. But since I got my laptop and lounge with it on my lap, the red dots and dryness are disappearing from the soft heat of the laptop. Weird. And, actually, over the years, despite how it looks, my skin feels rather smooth.

Teachers were not excluded in societies quest to continually remind me of abnormal my skin is and a reminder to how ignorant they are of understanding that there are genetic skin conditions in the world. Washing my hands after a cooking class, one teacher’s aid remarks, doesn’t ask why, just remarks on how rough my skin is just by listening to how it sounds when I rub my hands in water. All she asks is “Is that your skin” with a grimace on her face. How rude and unprofessional.

It took a friend, a good, best friend to remind me that, yes, my skin is different, but it makes me cool and that leaves room for my imagination to run amok with the idea that it does look like I could have been a mermaid, or  I can pretend I’m some sort of half human, half lizard. I can pretend it’s a mutation and I’m an X-men character. I still carry that imagination with me. It’s not going anywhere, so I may as well as have fun with it.

But I still long for getting into bed and not feeling sheet fibres catching onto little rough patches on my skin and have my feet feel like I’m not wearing itchy, thick socks without spending 40 minutes every other night scrubbing them away.

I have discovered how to manage my skin and, at least, keep the flakes to a minimum with regular spa days at home. I’ve been using a foot scrubber all over my body in the shower. (I do not recommend that for people who have normal skin.) My face has not looked so good since I was a kid. I enjoy Freeman products as they are very affordable and available at most drug store and department stores. I’ve been using the charcoal and black sugar polishing mask, key lime and sugar scrub, Banana-oat instant soothing mask to name a few. Just going through the site I see more that I want to try out. I will be reviewing these products and telling more tales about living with my skin woes as they come to me.

TTYL

 

 

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