How do I cope with the way I look? I am struggling with swelling in my face that makes me look freaky and disfigured. I am embarrassed to go out sometimes. Sometimes I don't care, but sometimes I don't even want my family to see me. I know I don't feel this way about other people, eg., don't care what they look like. I would appreciate any advice or if there is a smaller group dealing this issue.
Thanks,
Judy

Adjusting to a new appearance can be a huge challenge for some people. Just remember we are all of our own worst critics and are more harsh when we judge ourselves. But at the same time, this is one thing that can be especially difficult for women to handle. In time your swelling will subside and you will be back to normal. Many times even the worst scars will lighten and become unnoticeable. Some people cover things up with makeup and dress with turtlenecks and scarves. OC can be so difficult since it affects the head and neck areas which arent the easiest to hide.

I am permanently disfigured from OC. Im not talking about some swelling either. Mine is severe, I am missing half of my lower jaw and have no teeth. I will never forget the shock I felt when I first saw myself in the mirror and didnt even think it was me as I looked like a monster. I used to be pretty but even after several reconstructive surgeries its obvious I am not a normal person anymore. Children would be afraid of me in the grocery store which was hard to adjust to for a while. Now I go out and give public speeches at OCF awareness walks and speak to students about the dangers of smoking. But no matter what I look like on the outside, I am still the same person inside. That is what you need to hold on to and go out with your head held high. Nobody can take away your inner beauty and strength. Looks will fade in time anyway.

Just in case you were curious, here is a recent article with my photo. This was in the OCF newsfeed which is free to subscribe to.

New Face of OC article

People don't see what you see when you look in the mirror. Most of us, when we look in the mirror, are looking for imperfections. For one thing, when we look in the mirror, what we see that is on the right side, is actually on the left side when others look at us. And, when others look at us, they are influenced by the total picture - not just the physical aspect but the influence of all the senses. This was proven to me years ago while in my twenties, working for a large company in Chicago. There was a young woman in our office who aggravated the $%#% out of everyone until finally after being fired twice, she was gone. No one thought of her as being particularly attractive and no one missed her. Then one day, as I was watching the weather news on TV, I saw a beautiful young woman who was the new weather girl. I admired her beauty but after several minutes, as I looked more closely, there was something familiar about her and I then realized with a shock that she was the same unattractive (to us), fired twice girl from our office who had been having an affair with the married weatherman! We had been influenced by all the negative aspects of this difficult person and could not see the physical beauty. It works in reverse as well. If you allow all the beautiful parts of what makes you unique to the world, people will respond positively to you. Those who may only look at whatever imperfections there are, are not worth your time.

Listen to what Christine says. She is one very beautiful lady!

I couldn't have said it better myself. Dare I ask what the swelling is from?

I have a pretty uncommon cancer and a very rare presentation of it. The cancer is metastatic and spreads through the lymphatic system in my neck, blocking most of the drainage of my lymph system. For a while the usual treatments worked fine, particularly massage and exercise, which I did every day and with some wonderful therapists. But as the cancer has continues to spread and increase, it does not work. Now I am on steroids which help a tiny bit, but which cause swelling in other ways. (no win, huh?)

I know that I do not have that much time left available to me (no violins please!), but I just want to enjoy the time that I have with friends and family. The frustrating thing of course about OC is that from the neck down I am "healthy" and in good shape.

Appreciate the comments, it makes me think a lot about self-perceptions, what we see versus what we feel, and how we judge ourselves...

Mucoepdermoid Carcinoma (MEC), Salivary Gland Carcinima.

Judy, I do understand where you are coming from. Christine and Anne-Marie have given you some great advice and from a good perspective. Please continue to live and enjoy your life. Don't hide away. You deserve more.
Tammy

hi Christine,
How long did it take to "adjust" I am so impressed with your attitude. How did you manage it? Any and all advice appreciated. My left side of face is huge and eye often swollen shut. NOt to whine...but. Between you and I we would have one "normal" face." It is hard not to laugh sometimes, and hard not to be depressed at other times. Is there a specific group that deals with these issues, being in public and so forth?
fondly,
Judy

Judy, I have always been a very strong person. I was a single mother who raised children without any help. There was no one else but me so if I didnt do it, it didnt get done. When you live your life always being responsible for others, there is no other choice than to deal with whatever comes your way. Im sorry but I dont have any tips on how to help you adapt to your new normal other than to keep going. You are still you inside and those who know you and love you know you are still the same even if the outside package has changed a little. We are always our own worst critics so it might not be nearly as bad as what you think. Sorry, but I dont know of any support group that deals with disfigurement. Maybe try putting some effort into helping others, it can be a positive way to keep your mind from your own troubles by helping others with theirs.

Do the best you can with what you have. Best wishes!!!!

FYI Judy passed last week. Wonderful person. I had the pleasure of meeting her last summer.

http://albany.patch.com/groups/obit...r-albany-assistant-city-manager-19572013

Thanks for letting us know, Kate.

Judy sounds lie she was an extraordinary person. May she rest in peace.

So sorry and surprised since she just posted July 10.

So sorry to hear this news. It's so sad to lose someone even when they have only been with us a very short time - I was so hoping for some hopeful news for Judy. She seemed like such a sweet lady and so concerned for others around her.

Kate, thanks for letting us know. It was a real shock when I read your note since she just posted about her issues. She sounded like a very caring person. Too many lives lost to this disease. So very sad.

How incredibly sad. I read her obit and she sounds like a great lady who made great contributions to environmental protection. Who knows what else she would have accomplished!

[quote=Judy L]How do I cope with the way I look? I am struggling with swelling in my face that makes me look freaky and disfigured. I am embarrassed to go out sometimes. Sometimes I don't care, but sometimes I don't even want my family to see me. I know I don't feel this way about other people, eg., don't care what they look like. I would appreciate any advice or if there is a smaller group dealing this issue.
Thanks,
Judy [/quote]
I know exactly how you feel. One side of my face is slightly more big than the other after everything simply because my lymph nodes on that side don't drain the same way anymore. I think I notice it a lot more than others.
But especially during treatment when my neck was peeling and scab covered and oozing I didn't want to go out in public at all. But then I looked at myself in the mirror and thought to myself "who cares?!"
See I'm gay so my whole life I've been stared at, gawked at, made fun of. So in a way I was use to it. But I just thought to myself "I'm alive and I'm not going to let other people take away how I spend my days based on my war wounds.

I am almost seven years out and I still find it difficult to look in mirror...scars should not be like they are, I don't go out so I get still get very depressed about it....I hate going out as I still cannot eat or drink without choking

[quote=Winteriscoming][quote=Judy L]How do I cope with the way I look? I am struggling with swelling in my face that makes me look freaky and disfigured. I am embarrassed to go out sometimes. Sometimes I don't care, but sometimes I don't even want my family to see me. I know I don't feel this way about other people, eg., don't care what they look like. I would appreciate any advice or if there is a smaller group dealing this issue.
Thanks,
Judy [/quote]
I know exactly how you feel. One side of my face is slightly more big than the other after everything simply because my lymph nodes on that side don't drain the same way anymore. I think I notice it a lot more than others.
But especially during treatment when my neck was peeling and scab covered and oozing I didn't want to go out in public at all. But then I looked at myself in the mirror and thought to myself "who cares?!"
See I'm gay so my whole life I've been stared at, gawked at, made fun of. So in a way I was use to it. But I just thought to myself "I'm alive and I'm not going to let other people take away how I spend my days based on my war wounds.
[/quote]
I didn't know she had passed until after I posted this and see no way to remove it or I would. If a moderator would like to do so that would be great. I was just trying to send love and support and people can benefit from what I said regardless. My intention wasn't to hurt people so I'd appreciate if people didn't send me messages trying to hurt me for a honest mistake that came from the heart.
I'm so deeply sorry she passed and if this made anyone rehash this tragedy.