I am someone who likes to be in control. Not in control of you or my children or any other person, but of myself. I like to know that at the end of the day, most of what I succeed or fail at is my own doing. That I am in control of my own destiny.
But there are many – MANY – things in this life that we can’t control. The world doesn’t work that way and I’m pretty sure that the idea of controlling anything isn’t really what mother nature had planned.
I believe that the need for control often comes from the need to calm our own anxieties. I get anxiety when I am two minutes late to an appointment or party – even if it is just with family, I like to get my work done days before a due date just so that I don’t have the deadline looming over my head, and I note dinner ideas on the calendar weeks ahead of time just so that I don’t have to try to come up with something on the fly. This is a me thing, not something I expect from anyone else, but at the end of the day, these things calm my ever fraying adult nerves.
For those of us living with and managing vitiligo, control is nonexistent. Your skin pigment does what it wants when it wants and you are just along for the ride. It’s not a bus you would have gotten on if you’d had the choice, but that wasn’t one of the options – just like so many struggles we all deal with.
I have had vitiligo for 24 years and although the changes unnerve me, early on I made a deal with the universe – that I really didn’t care about the skin on my body. I have a lot of health issues. I’ve had seven surgeries, I have a collective of approximately 20 mid-region surgical scars that my daughter one day wants to do connect-the-dots with, and I’m not at risk for ever wearing a bikini. I have given my body up to the universe and decided that I just want to have a happy life. If this stuff comes along with that, fine.
But the one thing I’ve always hoped was for very little vitiligo on my face. I have had a little bit for years. It hasn’t changed too much and I got used to the fact that almost no one noticed. I am Caucasian and I am adamant about staying out of the sun (I have no pigment in various areas of my skin, so it’s just safer), so I have had the ability to mask some of the color differences by not being too tan. Believe me, I know that this is a privilege. I don’t take it for granted.
One of the few things that is known about this disease (and most autoimmune diseases) is that stress makes it worse. This is one of the reasons that I try to organize and control the things that are most likely to overwhelm me in my daily life. It doesn’t always work, but I try.
That said, I think we can all agree that 2020 has been among the most stressful years in recent memory. As much as we may still find laughter in our daily lives (and I truly hope that you do!), there has been an undercurrent (among giant waves) of constant stress since March. Regardless of where you stand on any of the conversations currently in front of us, this has been an incredibly stressful year.
Three days ago I looked in the mirror and found a fairly large patch of vitiligo below my nose, all the way across and at an odd angle. It was not a good day. I couldn’t look my family in the eye, and off and on I felt like I was on the verge of a panic attack. This is what I’d been dreading for 24 years.
I have a “medical grieving process” that lasts about three days (yes, I totally just made up that saying). The first day I take in the information. Sometimes I panic, sometimes I am sad, and sometimes I just need to process.
The second day I am usually a combination of frustrated and sad. I have stuff to do. This isn’t what I wanted to deal with and I’m seriously annoyed that again I’m having to think about this crap instead of my real life.
The third day I find my resolve. Is this going to kill me? No. I am unbelievably lucky enough to say that nothing that I have dealt with – if managed in a timely manner and/or with meds – would kill me. So I get to be here for my husband and children. I get to spend time with my family and I get to continue to enjoy and be a part of this world. That is huge.
And so, here I sit on the fourth day as I write this. Yesterday evening I was brave enough to really study the skin on my face. I am not someone who wears makeup and honestly, the only time I really look in the mirror is in the morning to see if I have zits or if my hair is decent enough. I wear almost no makeup (the occasional eyeliner if I feel like I look tired or mascara if I’m being fancy) and I put lotion on without looking. It isn’t that I don’t like the way I look, I just truly have a fear of seeing skin differences. So if I barely look in the mirror, I can’t see them. A little like an 18 month old who plays hide and seek with a blanket, I guess!
What I discovered about my face yesterday is that there are more spots that I haven’t seen. I see them distinctively and can point them out to you, but from what my husband and kids say, no one else would see them. And what I know to be true is that everyone else is so busy dealing with their own stuff, they really don’t notice yours all that much.
I am who I am. I like me, actually. I think I’m kind and engaged and silly. And what I’m trying to remind myself of right now is that this issue doesn’t really matter. If I tell my kids that beauty comes from the inside, I need to try to listen to myself. And now, after one of my biggest worries has come true, all I can hope for is that the vitiligo will continue on my face and even out the skin. Am I scared of that? Absolutely, 100%. But I’m not in control of this situation. So all I can do is hope.