roald dahl

Today, I came across these photos of a woman who began documenting her life in a series of photos called, “Self-Portraits”.  In the photos she was showing some of her most personal moments.

Take a look:

Although I am not overweight, I really found myself identifying myself with this woman.  I have always been very self conscious.  I have a genetic disorder called Neurofibromatosis (NF).  It is not a disease but a disorder of the nervous system that causes tumors to grow on nerves.  It presents itself differently for everyone but one of the symptoms causes skin changes and deformed bones.  For me, this is the case.  It is not contagious.  NF causes tumors which are growths of excess tissue from the nervous system. Some people, like me, develop neurofibromas under the skin, which appear as “bumps”.  They are not usually painful but I find them ugly.  I have fibromas all over me.  Most of them are small but they can range in size.  They are on my hands, feet, neck, stomach, back, legs,…pretty much all over.  This has made me an extremely self-conscious person.  I wear my hair long and usually draped over my shoulders.  I find that it helps me “hide” behind it.  I love winter, when I can wear long sleeves and sweaters to hide my arms.  I wear a tank top under all of my shirts so that if my shirt raises to reveal skin, instead you just see another shirt.  I have one on my chest so I will NEVER wear anything with a v-neck or low cut.  I spend way too much time pinning my shirts so that if I bend over, no one will see it.

NF can present itself it many different ways, such as learning disabilities, deafness, and blindness. I try to remind myself that I need to stop being so vain because for me, the only affect that I have are “the bumps”.  I know that it could be so much worse. I can walk, hear, see… I have never been teased or mocked for it.  Most people, especially children, are just curious.  They want to know if they can feel them, or if they hurt.  I usually just tell them it is how I was born, sort of like a bumpy freckle.  The best thing about kids is, once they have an answer, they go on and forget about it.  I wish it were that easy for me.

There is nothing that can be done for it.  Yes, they can be removed, and I have had some of them taken off, but there is no way to get rid of all of them.  Some people who have them removed, wind up getting more of them because they grow on affected nerve endings.

I have learned to live with it.   I am aware of them ALL of the time.  When I talk to people, even though I know that it is all in my head, I think that all they are focusing on are the “bumps”. My husband doesn’t care.  He tells me that I am beautiful everyday.  I just don’t feel it.  I try to.  I really do.  I look at myself in the mirror and don’t see it.  I am embarrassed to say that I am mean to myself.  I call myself ugly names that I would never, ever speak to anyone else.  I sometimes wonder why I bother with makeup since I cannot hide them.

I know that beauty is not only on the outside.  It is my motto!!  I do have areas I try to focus on.  I love my green/blue eye color.  On a “good hair day”, I love my long hair. I don’t like getting my photo taken, but there are a few that I actually do consider myself pretty in.  Those are what I need to look at to remind myself of my inner beauty.  I know it is there.  I just need to find the confidence to find it everyday.


Tagged: , , , , , , ,

16 thoughts on “Inner-Beauty

  1. Marcia April 24, 2013 at 7:20 pm Reply

    Hi Claire, How honest you are; it’s very rare and so valuable. I’ve never noticed the flaws you’ve listed in yourself. Not one time. Not in photos, not in life. Not in the sun on a soccer field, not in a dim restaurant.

    (I do think it’s interesting that you TAKE beautiful photos, though, and note that you don’t like having your picture taken. )

    But I don’t dismiss your worries, not one tiny bit. I see the flaws in my body too, especially since I spent much of last year bald and terribly pale. My eyebrows and lashes are back, as is my regular hair, but what I see in the mental mirror is pretty damaged goods. I don’t know what the real mirror shows….what the heck? I’ll be as honest as you: I’ve showered in the basement bathroom since I had surgery last year. The mirror in that bathroom is around a corner, so there’ s no accidental glimpse.

    Okay, must hit post before I chicken out 🙂 Thank you, Claire.

    • clairesinclair April 24, 2013 at 8:22 pm Reply

      Marcia – you have no idea how hard it was for me to post that!!! I actually sent it to a friend first. I said the same thing….must hit send right now!! Otherwise I would have definitely chickened out. You are surely not damaged goods!! It is pretty amazing how we all see ourselves. Have you seen that video going around facebook that DOVE put out about inner beauty? It is pretty much right on target.
      PS I am glad you hit “post”.

  2. Mary April 24, 2013 at 8:15 pm Reply

    I have always found you very pretty and thought you had beauty marks–that’s still what I think, whatever scientists call them!

    • clairesinclair April 24, 2013 at 8:19 pm Reply

      Thanks Mary. When I was little I always called them Beauty!! 🙂

  3. Helen April 25, 2013 at 5:43 pm Reply

    You’re a really beautiful and inspiring young lady. My girls always thought you were cool at OLS and always looked up to you. Recently, I went to a talk by a nutritionist with my youngest daughter. The nutritionist had us do an exercise where we had to tell the person next to us how we talk to ourselves after we eat something crappy. I felt so bad having to expose to my daughter that that is how I talk to myself when I hoped that she never felt that way about herself. Anyway, the nutritionist then had us turn to the same person and tell them what we would say to a friend or loved one who just filled themselves up on crap. The difference was amazing and helpful. I think the only way it would of made the impact that it did for me was revealing it like that to someone I try to be a role model for. You have revealed yourself as a role model on so many levels. Keep up the great work!

    • clairesinclair April 25, 2013 at 6:09 pm Reply

      What a great activity!! It is truly amazing how down we get on ourselves. I have been thinking about it all day. It was such a tough blog for me to actually publish…I was so nervous sending it. Thank you for all of the confidence.

  4. Lisa April 27, 2013 at 9:29 pm Reply

    I believe it takes a VERY confident person with tons of inner strength to be able to share their insecurities like you did. Remember that on days when you feel down about yourself. You have bumps….I have big arms I can’t stand. We ALL have things we want to hide and and wish we could change. No matter what anyone says, it’s a constant battle we all have with our inner selves to wish we were somebody else. I don’t know if this helps (because at the end the day, it’s about finding peace within yourself) but when I look at you, all I see is this beautiful, strong, smart, funny, creative big cousin who I look up to. EVERYONE has “bumps” – its what makes us unique and special – both of which most certainly are!! I love you no matter what you look like. We all do!

    • clairesinclair April 28, 2013 at 7:52 am Reply

      Lisa, I still cannot believe I actually hit “send” on this one. I love you too and I admire your beauty, strength and what a great wife and mommy you are. It is amazing to have cousins who can be as close as we are. Thank you.

  5. faridahrose May 16, 2013 at 12:00 am Reply

    I am almost in tears right now, because I feel like I wrote some of these words myself, I too have NF, married to a wonderful man, but look in the mirror daily and sometimes just want to smash it (or myself) I HATE my body and feel like I am so alone with this, thank you so much

    • clairesinclair May 16, 2013 at 4:55 am Reply

      This was one of the hardest blogs I wrote. It took a lot for me to actually hit post and put the words out there. I hate that NF makes me feel like this – but let me tell you, after posting this and being so honest, I have so many people let me know that what is on the outside is really not so visible when you are a beautiful person on the inside. I have known that forever, it is just hard to make myself realize it.

  6. dale gianni November 21, 2013 at 12:10 am Reply

    my sweet beautiful claire; u have bumps????? WHERE??? I never noticed!!! U, my dear, are the most special person on the planet…i do understand somewhat, because for my whole life til i found Keratin, i was always so embarrassed….i had a big nose, and FRIZZY hair…Growing up,
    when all my friends went swimming (especially at the beach), i ruined everyday for myself because i knew i couldn’t get my hair wet cuz i would , once again, be called BOZO!!! i always felt my body was my only attribute; and now….at 63 and not having time to exercise with this move and all the stuff in our family before this; i have let myself go and all i see is “old lady wrinkles” !!! It’s as though i’m looking at someone else’s body cuz this couldn’t possibly be ME!!! but yes, it is ; and i know i’ll get back to working out again when things settle down, but i’ll never be 17 again, or even 57 again…so i beat myself up and then move on….U r the most giving person i know and i have one more thing to tell u….b4 lisa was born, u were like our very 1st daughter…we love u like our own, not just a niece and we always will…bumps and all baby….u are just PERFECT!!

    • clairesinclair November 21, 2013 at 7:00 am Reply

      Thanks Aunt Dale. I don’t know who “sets the standards” for what beautiful is, but we all need to stop beating ourselves up for not feeling like we already are. I love you – wrinkled, frizzy or not! Believe me, I still look into the mirror daily thinking I am still 30 and then gasp and wonder what happened! I love you 🙂

  7. Alli Joseph December 12, 2013 at 2:57 pm Reply

    You are beautiful, inside and out. As the measure of a person is what they do and not what they say, so it is with beauty: actions and intention are worth more than anything Dorian Gray’s specter could offer. Know that you are so valued, and that you are both kinds of lovely – in spite of the challenges of the difference you’ve carried your whole life. And I do hear how difficult it is for you every single day. Still, your light shines.

    • clairesinclair December 12, 2013 at 5:28 pm Reply

      Thank you so much for that. It means so much.

  8. mitchypoo December 2, 2014 at 7:43 pm Reply

    This post has really stuck with me. I can be so critical of myself too, even more than I am with others and it really makes me think. Why are we so unkind to ourselves sometimes? There has to be something we get out of doing that? I’d never say to someone else the things I sometimes say to myself. Well, I guess I can only do better. And I think it’s really great to think of them as your beauty marks!

    • clairesinclair December 2, 2014 at 7:59 pm Reply

      Some days are very hard to think of as beauty marks….but I am learning to let go of some of that criticism I have towards myself. Believe me, it is not easy!!!

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )


Connecting to %s

%d bloggers like this: