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I DO look sick

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Posted 10/22/2011 3:21 PM (GMT 0)
Hi Everyone,

How many times have you had someone tell you while you tried to explain the illness of Fibro, Well, you don't look sick :) Or But you look good :) I have had this said to me so many times I have lost count. I've grown very accustomed to this comment. While the person who says this to me has no idea how demeaning this statement actually is to me, I do understand that they are trying to offer support or sympathize. I've stopped letting it make me angry and I accept the complement.

I recently was given an opportunity to create a photo book with an online website. I thought I would use pictures of my husband and 2 boys from some of our best times together over the years. What I realized after looking at pictures from only 5 years ago is... Yes, I DO look sick. Others may not be able to see it, but I can. I totally can. I showed a 5 year old pic to my husband. He understands what I see. He also can see. I told him maybe I should start carrying a 5 year old pic of me around and when someone says I don't look sick and show them. I don't know if will really do this, but I have a feeling I might tell close friends I've had this realization. A person does change in 5 years. But, I am not just talking about aging. I just turned 50 and I am told every day, that I do not look my age. I've been told this all my life. I don't see age, I see my face before I became chronically ill, and I see my face now and the pain is there, it's there in my face.

I just wanted to throw this out there.

Thank you for reading my thoughts. idea
Posted 10/22/2011 4:09 PM (GMT 0)
I have fibro along with a connective tissue disease. I no longer look the same...having dents...subcutaneous defects of tissue on differant parts of my body, an abnormal patch of tissues on my forehead and at times lupus lesions. My hands are arthritic and I have some skin tightening due to scleroderma.

I've learned to stop focusing so much on what I look like and start appreciating everything that I do have in life...a wonderful family and friends...the ability to laugh and have fun.

Life is too short, our bodies are only temporary. The real measure of who we are has nothing to do with what we look like.

No matter what we may look like, life goes on, it is for us to enjoy :)

Hugs, Robin
Posted 10/22/2011 4:28 PM (GMT 0)
I hear you on that one! I get the same response. I'm 45 and although I don't look my age either (Miss Clarol is my best friend) I can see it in past pictures. I have a good friend at work and he says he can see it in my eyes. They are not full of life like they used to be. He said the sparkel is gone and he sees the pain in my eyes. Other than my fibro and back problems I have plenty in my life to keep me happy so it isn't like I'm depressed. It is so hard because we want our pain to be validated but I don't think it ever will be in our life time anyway. We are lucky they (most doctors) are finally recognizing it as a lagitamate illness and not all in our heads. Lupus was missunderstood for so many years too. Now everyone is aware. Not a day goes by I don't wish I felt like I did before the fibro set in. It impacts every aspect of my life.
Posted 10/22/2011 5:02 PM (GMT 0)
Hi Crazy and Erie,

I color my hair too and I don't plan on stopping anytime soon! Just had it done yesterday. I wanted to add I am really not hung up on my looks or worried about it. It was just that I had this realization that I DO look sick. I didn't know I did. Because of so many people telling me I don't look sick and because I guess I hadn't looked at 5 year old pics in awhile. I had no idea how obvious it was. Erie, what you said about your co worker is exactly what I am talking about. My skin has lost glow, it has a grey tinge to it, my hair is dull, and my eyes do not sparkle either. I am not depressed. I am happy as I can be, have my down days for sure, but I am living to the best of my ability as it does affect every aspect as you mentioned. I also have a very loving family, friends and am blessed. My best to both of you and thanks for writing to me. :)
Posted 10/22/2011 6:06 PM (GMT 0)
Springsun,

I completely understand what you're saying, too. People tell me I look good, and I think, "compared to what?" When I look at recent (last 5-10 years) pictures of myself, I see skinny but flabby, tired, weak, and just plain burned-out. I used to wish I didn't have such chubby cheeks and that I could lose weight. Ha! I tell my girls now to appreciate the way they are NOW.

Of course, what we look like doesn't matter in the grand scheme of things, true, but I guess what bothers me the most is that it makes me realize how unhealthy I really am.

Debbie
Posted 10/22/2011 6:37 PM (GMT 0)
Like Debbie, I have shrunk under my skin, especially in my face. I look at least 10 years older than I am, awful compared with just a couple of years ago. I have lost weight, but there's more to it. Being sick from one thing after another is the real cause. I have been embarrassed with the way I look.

First I had a heart attack, then breast cancer, then a bad wreck that caused all sorts of problems I've been treating for 2 1/2 years and will never completely recover from: stomach shoved into chest, nose broken and displaced and chronically infected, knee damaged, etc. Front tooth displaced and dead. Then a diverticulitis attack that was really caused by a ruptured appendix, causing an abscess, treated with antibiotics, but recurring this year requiring 2 operations and a month in hospital. Then shoulder developed bone spurs, got operated last week.

I died my hair whild I had kids in school, never really liked it. I gave up dying because my real color looks good - silver, not dull gray, going to black at the back. Dying was too much trouble and now people hold doors open and let me into traffic.

Now that I seem to have beaten the infections I feel better. I have hope I will start to look better too.
Posted 10/22/2011 6:54 PM (GMT 0)
Personally I don't care how I look to other people.  I most generally look better than most of the women I see in the stores.  I may have more wrinkles and walk with a limp but I always put on make-up, have my hair done nicely (I color it too), am well-manicured, and wear nice outfits whenever I go out.  I can't do any more than that.  Besides, if you smile, THAT'S what people notice!

 

Sherrine

Posted 10/22/2011 9:22 PM (GMT 0)
I am 58 and I have virtually no grey hairs and no wrinkles-my friends hated that, but if you see the dark circles sagging under eyes and pain I look 80. My husband has terminal cancer in remission...well the gossipmongers jhave decided that he doesn't have cancer-he still looks great, muscular, good-lookin...maybe they will cahnge their tune when it hits his bones...people are so superficial....if they don't count on my list, I don't give a hoot what they say. Between God and me , wwe're good-lol

Maggie
Posted 10/23/2011 10:03 AM (GMT 0)
Interesting thread, how many of you have friends who can see you fade just by looking into your eyes. They can tell, for example when we're out to lunch, that my pain is increasing and I'm becoming more tired.
Posted 10/23/2011 2:11 PM (GMT 0)
"It doesn't happen all at once, You become. It takes a long time. That's why it doesn't happen often to people who break easily, or have sharp edges, or who have to be carefully kept. Generally, by the time you are Real, most of your hair has been loved off, and your eyes drop out and you get loose in the joints and very shabby. But these things don't matter at all, because once you are Real you can't be ugly, except to people who don't understand."

The Velveteen Rabbit
Posted 10/23/2011 3:21 PM (GMT 0)
I LOVE that quote!  Thanks for sharing.

 

Sherrine

Posted 10/23/2011 3:31 PM (GMT 0)
Springsun,

I love that quote! So true, and so important to remember.

I just lost an old family friend, a life-long aunt figure, who was 91. There was hardly a dry eye at the memorial service yesterday, but there was also much laughter.

On her bedside table, she kept a quote that said:

"If I should live to a ripe old age 

may I possess some bit of
individuality, charm and wit.

That I may not be discarded
when I am withered, worn and

weak, but sought after and 

cherished like a fine antique."

......and she was.  

Debbie

Posted 10/26/2011 2:10 PM (GMT 0)
So nice to read all of your posts on this topic. I am so happy you liked the Velveteen Rabbit quote. I just love it too! It helps me soooooo much.
Posted 10/26/2011 9:53 PM (GMT 0)
I've been really sick with kidney stones and had my gall bladder and appendix out over the last year - I turned 24 this past June. I also lost my father in January to cancer so its been the worst year. My boyfriend and I were looking at pictures of us over the last year and I couldn't believe how I looked. I've just started getting better after everything and when I commented on my tired appearance he said how I didn't look so haggard now. I just thought...my boyfriend described me as haggard...god I'm 24! And he used that to describe me over the course of a year... Part of me thought of it as funny, the other part just sighed.
And I started going grey at 16! Just little hairs here and there but there are more of them every year - I don't get the chance to see them very often because I dye my hair all the time - not because of the greys just cause I love to do it.
Posted 10/26/2011 11:34 PM (GMT 0)
I definitely think the eyes say it all. When I'm tired I can keep listening and laughing, but my husband
can take one look at my eyes and know how I'm feeling. I can tell the last few years have been
hard because I have dark circles under my eyes and my skin is dull.

I do like the Velvetine Rabbit quote,... going to print it and frame it!


Sharon
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