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janey

"you Look Good"

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Peggy,

I'm totally with you! With all the holiday parties this year, my hubby (more so than me) was struggling with all the positive comments about how good I looked. He knows the truth, so it was hard for him not to tell people that I feel worse than I look. After one party he told me "you have got to start wearing your oxygen to these parties so people will know what you are dealing with!" I wear my O2 every where else, but I find it a real pain to deal with in a crowded situation; but more so than that - it's a party! You should be having fun - not dealing with negative things.

 

So YES - I so understand what you're saying. It is frustrating at times.

 

Big Hugs,


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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I totally understand too!!!

I always try to put on a happy face, especially when my kids are around. But sometimes it is so difficult. This holiday season was exhausting and I know it took a toll me because I still don't feel like I have recovered. I saw tons of people and they all say the same thing, "you look so good." You know you feel awful and you want to tell them just that but I know it is not worth it. I just smile and say thank you. The same goes for the people who ask how you are. They really don't want to know, it is just their way of being polite. I guess I have just learned to grin and bear it.... until I come here to vent!

 

Hugs,

Lisa


Lisa Bulman

(Retired) ISN/SCTC List Coordinator

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Fundraiser

International Scleroderma Network (ISN)

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I actually have a little bit different kind of experiences.. I look very healthy and happy normally. I'm THE person, who's always smiling. I think it's cause if I smile, it makes me happy to see people smiling back at me :) It's a role, and once you've got it, it's impossible to let go. So even that I am in pain, feeling very tired, ran out of "spoons" and ready just to let go, ppl are still always saying to me "oh you look so happy". It's hard to be the smily-one, cause when you don't smile anymore, no-one knows what to say to you or to do with you.

 

It's hard to say that I am sick, if you just look at me. So it's usually impossible to explain to people that I am sick, I don't feel good. They don't understand.

 

Emmi

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Peggy,

 

YES YES YES. I have to say though, that those who are important to me in my life and those who really care about me, can now see that I don't look so good at times. I hear a lot of "How are you" then they look at me and a few of my friends will say "Ohhhh you're having a tough time today huh?, I can see it in your eyes"

 

Some people will never "get" it, and there is no sense is wasting any of your time and energy on those people. :)

 

Just my humble opinion.


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Peggy,

 

I can also totally relate. I even get this from my parents and other family friends as well as other "friends". As many of you have said, we have become become very good actors. I often ask myself why. All I can come up with is that I don't want other people to feel uncomforable and/or I don't want their pity.s

 

My standard response has become "no matter how crummy I might really feel, I guess it's a "perk" of having rare diseases: you can still look fairly good on the outside." People generally don't have much to say after that besides well, I guess that its a good thing.

 

But boy, do I get sick of hearing that. It makes me want to scream!

 

emmie

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I can sure relate to this. At first, I was really bothered by the discrepancy between how I looked and how I felt. And I felt a bit put-upon when people (even those who should know better) would exclaim about how great I looked. Plus I complicated that by nearly always telling people, and even my doctors, that I'm "dynamite".

 

I figure, "dynamite" is an attitude, not a statement of health nor even energy levels. And it makes me feel good to smile and say I'm dynamite -- a little perk-me-up that I am accustomed to and an integral part of my pre-illness identity that I was not going to any circumstance take away from me.

 

Just to make matters worse, I make the effort, for most excursions, to use concealing makeup to take me from haggard-washed-out to a fairly youthful but definitely more sparkling glow. I also rest up well, before and after any activity. Sometimes, for days, depending on the level of exertion it requires.

 

The net result is that when I am out in public, I come across as being a zillion times peppier, healthier and prettier than I actually am. I'm positive some people (and even doctors) take that the wrong way.

 

So I have thought about letting it all go more often and just being me, naturally. Then I figure, what a total wreck that is! So I've resigned myself to not accruing any sympathy or understanding (like Sweet said, some people will never "get it" anyway) and to receiving plenty of delightful compliments about how I look so great, so healthy.

 

Bottom line? I'm really grateful that I don't look or sound as bad as I feel, and I do think that pretending to be healthier does infuse me with a bit more joy and energy, which is hugely important to me. And when my attitude bites the dust on this, which it occasionally does, I smile and say, "Thank you! I'm truly delighted that I don't look as bad as I feel today."

 

Which is awful, I know, but frankly I don't have the wherewithal to be cloyingly optimistic all the time.


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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I actually make it a joke... yes, I get a free tan skin and face lift with my purchase of scleroderma, a million doctor appointments and over twenty medications. If you're jealous we can trade?

 

I suppose these days I LOOK less like myself since I wear oxygen everywhere and have the prednisone butt, stomach and chubby cheeks. My new look convinces the skeptics who see me every day - even my chain smoking neighbor put her cigarette out - but some of my relatives have not seen me. At Thanksgiving these relatives asked my mom how I was in a very nonchalant tone - it really, really bugged my mom. She told me it was like they had no idea how serious my condition was.

 

I suppose the only people who understand are HERE. :)

 

peanut


You can deprive the body but the soul needs chocolate

my HMO makes me wear a helmet...

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Hi All,

 

Funny that I read this thread today. I just got back from my 3 month check up with rheumatologist and Pulm doctor. Since I started working, I have also been wearing makeup - which I haven't in 10+ years - so now when I don't (and I didn't to my appts so doctors could see my skin), I really felt like I looked awful but was told how great I looked by both doctors! :lol: In reality I looked pale and exhausted! I think they were just trying to be nice.

 

I'm so naive and starved for compliments that I suck it up like a dry sponge in a downpour.

 

speaking of exhausted.....Good night all,

 

Miss & Love yas,

Barefut


Take care,

Barefut

 

Serena Justis

ISN Blogger

International Scleroderma Network (ISN)

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Barefut,

I had a similar experience. Someone told me I had much healthier over the last month. I told them it's called blush.

 

peanut


You can deprive the body but the soul needs chocolate

my HMO makes me wear a helmet...

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Yes I can also relate to this. Recently my brother and I have been in contact with each other after nearly 10 years of silence. My brother knows that I have Limited/Crest /Scleroderma, he as asked many questions over the past 4 months about this, and I have answered them all.

 

I got a phone call from my brother a few days ago and I was very upset and crying. He told me that I don't have Scleroderma,that it is all in my head and that is why I keep going to specialist to specialist, as I can't accept that I am well.

I told him that he is welcome to come to my specialists' appt with me if he didn't believe me. Obviously he declined, the conversation ended up with him swearing at me and becoming hostile and so I hung up the phone.

 

It's sad really as I had hoped that we could become friends again, I now know that this can not be. He is a very opinonated person and we clash terribly, since that call I have broken out in eczema all over my body, with the stress and all.

 

Take care

Celia

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Just needing to vent here...........................

 

Is anyone else out there sick of hearing "but you look good" ?!? Even though I feel awful I guess because I look good on the outside I must feel fine. It gets frustring because this disease is so internal and you feel so terrible that on the outside it's hard for people to think that you are sick.

 

I just needed to vent as I get so sick of hearing that expression that I guess you need to look sicker than a dog all of the time for people to believe that you are sick as you are.

 

Thanks for listening.

 

Warm hugs from Minnesota.

 

Peggy

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Hi everybody

 

Not sure if you mean to or not but sometimes you guys really crack me up with laughter....it's a good thing you all have that delight! It's really funny how each of us thinks of things when others comment on how we look.

 

Ced, sorry to hear about your brother.....sometimes it is really hard to figure out where someone else's head is, isn't it? Just keep doing what your doing for yourself and try not to worry about anyone else's opinion, even if it is family...I know, much easier said than done :huh: . I know it's really hard to move on but just try to look after yourself...and things will work out in the end, somehow they always do even if it's not what we expect or hope for. Hope you get some relaxation in somewhere to relieve that stress.


Sending good wishes your way!

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I met up with a good friend that I had not seen in a while. She looked at me and said "You may not feel good but you look great". Of course I thanked her and told her I feel like awful. The truth is that I really appreciated that she acknowledged that I may not feel too well. It's nice when people really do 'get' it.

 

Ced, I'm so sorry about the trouble with your brother. It's a real shame when we cannot rely on family. Best of thoughts to you.

 

Sherion

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Hi all. Have to say that I get the "you look so young" thing & it happened today as well with a co-worker. I take it as a compliment & always use the line - well, you normal people all get wrinkles & I don't! that seems to take care of it pretty good!

 

I also think that those who really know us know by our eyes how we really are inside & the rest only see what we want them to! Sometimes just by saying the words that we may not look so good on the inside will get people thinking as well!

 

Lately I've been unlucky enough to have some ulcers on my fingers & have had "something" to show for my disease other than unwrinkled skin at 50 & most people thought it was just the weather so I tried to explain to those who were worth explaining to & the others I just let it go!

 

I think we have to accept ourselves & not worry what anyone else thinks even though it's sometimes hard ... that's why we have each other to vent to! and we're really the lucky ones because we have each others where alot of other people are lonely in their struggles!

 

Can't help but be positive & hope it makes you guys smile! Thanks for being a good part of my world!


Soft hugs your way,

 

Michele

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Ced this really stinks to high heaven. I'm so sorry that it worked out like that for you with your brother. But you know what, as someone else said, 'some people will just never 'get it'' and it would be better for you now that you'd given it your all, to not bother trying to get him to 'get it' Maybe it's just too difficult for him to accept that you might need his help? His support? And so this is his way of dismissing the entire problem from his life. Shame on him for that. But you can't change him, you can only change how you react to him! I say, kiddo, throw him under a bus. : (i.e. let it go, walk away, shake it off)

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