Has Dysautonomia Changed Your Appearance

[mae]

I was noticing changes I've been experiencing since I became sick, and was wondering is this a invisible condition or have you all noticed changes within yourselves also.

[Rachel]

What do you mean by a change in appearance? Paler skin? Different facial expressions? A look of fatigue on one's face?

Most people can't tell by looking at me that I'm not feeling well. Those who know me well notice subtle changes in facial expressions and/or the way I sit. The sparkle in my eye also fades some as I feel worse and worse. But, again, someone would have to know me well to notice that. On the really bad days no one but my family sees me, because I have to stay at home or in bed. But on those really bad days, I don't think anyone could mistake me for a healthy person.

Rachel

[mae]

What I am meaning is : Do you have to frequently explain how your feeling because YOU DON'T Look SICK

OR Has your illness taken a toll on your appearance and you Don't recognize yourself anymore (And you always say to yourself in the mirror WHAT HAS HAPPENED ?

[erikainorlando]

Yes. I thinkn my appearance has changed.

I lost a lot of weight and am trying to gain it back. I also lost a lot of muscle tone. Legs are flabby now and so is my stomach. My body still just doesn't look well to me. I think most folks who know me can/could tell I have been very ill. I think I am starting to look a little more myself as I have gained back some weight.

And...on bad days my boyfriend says my eyes look almost dazed over. He can tell immediatly along with others close when I am really not feeling well at all.

Erika

[Brye]

My appearance has changed. I've gained weight and retain a lot of fluid. People keep telling me I look tired. I don't like people knowing I'm sick though. I've tried really hard to keep my kids from knowing because they're still too young to understand.

Brye

[summer]

I must look better than ever, because everyone who sees me tells me how great I look! -- even though I feel terrible.

Actually, I don't believe my appearance has changed.

Summer

[potsgirl]

Sometimes I could just scream because I consistently hear 'but you don't look sick at all' so many times. That, and how people will glare at me when I use a handicapped place to park...Sometimes I won't even use one because I get tired of people giving me nasty looks. On my bad days, I just look really sick with droopy eyes and I drag around. I probably look just like anyone else that has the flu or a bad cold. It's kind of a good news/bad news kind of thing.

Interesting poll, Mae.

Cheers,

Jana

[flop]

When I am really bad (ie just about to faint), I apparently go very pale. A few years ago the guy who was my boss at the time said he knew if I was about to pass out because my eyes would change (he couldn't explain how, possibly that they drifted out of alignment?). I didn't ask more as I was rather freaked out as to why he was watching my eyes so much!

I have gained weight over the past few years but other than that my appearance is unchanged. Former collegues who don't know that I am off sick still ask me where I am working and look astonished when I tell them I'm on long-term sick.

I get fed up of the "but you don't look sick" comments too.

Flop

[Rene S.]

Absolutely has changed mine and not for the better. I started out pre-pots as weighing 104. Now, 7 months later, I'm 88 lbs. My hair has gotten thinner, my skin is saggier (loss of muscle tone due to exercise intolerance). I look and feel older. I notice red circles under my eyes. There is a horrid frailness about me. I look breakable and where in the world did my breasts go? My eyes have lost their sparkle and there's no spring in my step. Sad.

Rene

[tinkerbella]

people tell me i look great and that's flattering. i have and still do look 10 years younger than my age. i say it all depends on the day, some days i'm so dehydrated by the time I get to the hospital I look like crap. when I'm wheeled out they say i look all perked up. Plus i'm allowed to sleep the day away there.

have people wait on me, bring me two meals, no wonder i look better. i live alone so this is a treat. they really think i'd look better going 2 days but i'm running out of veins. suddenly a pick line is starting to sound nice to me. Oh, i walk with a crutch and I asking for my own wheelchair this week. (the crutch is a conversation ice breaker, as everyone asks what did you do to your leg? so i meet lots of people educate them. the wheelchair will make me feel old appearance wise)

[bizbiz]

My appearance has not changed at all. I guess thats a good thing, but it can be pretty frustrating when you see people that you havent seen in a few weeks or months and they say "oh, are you still sick?" or "at leat you look good".

I have said to my husband many times that I feel like attending functions without washing my hair or doing my make-up and dressed in my trackeis just so that people can even get a little idea of how I might be feeling, because unfortunantly, as you all know, if you dont 'look' sick on the outside, its hard for others to understand.

[potsgirl]

Rene~

Now, I've seen your photo and you looked very pretty. I know you've lost too much weight, and I've got the same reddish/purplish circles under my eyes- heck, they take up half my face it seems! So don't be too hard on yourself. I'm sure you're still a very attractive woman. If I use any make-up, it's for those undereye circles...and don't forget to count your 'you know what'!

Cheers,

Jana

[tinkerbella]

It really doesn't matter what we look like, as recently I had to teach this lesson to my little one when she was 3. we were all out shopping and she though she saw the, "wicked witch from the wizard of oz." She made this known and loud and clear as she hide under the clothes rack. The woman caught on and it was very embarrassing. long story made short, it was time for a grandmother to sit on the floor and explain that you, "don't judge a book by it's cover", at a 3 year old level. I won't go through the whole story, but looks aren't the most important thing to me. Some of the most beautiful people I know are average looking and then by the time I get to know them I realize just how beautiful they are.

Last week she asked me to turn around as I was in the front of the car. " i want you to see you face, i forgot what it looks like." "I want to see if it's all squished up and you neck is hanging and your old." I turned and looked at her and she said, "On I forget, your OK." I laughed and looked at her mom and "said, " I won't always be this way, we better tell her now," and laughed, laughed, and thought about the day in the store with and the teachable moment that beauty isn't everything.

Regardless if we are sick or not we all change are appearance. Some for better some worse. I say it's all in the genes for the most part and best not to focus on it. Gravity catches up with most of us eventually, unless you have lots of money and can have repairs done. LOL!

these were just some after thought. I'm trying to grow old gracefully with my pots. now back to try to garden.

[Rene S.]

Rene~

Now, I've seen your photo and you looked very pretty. I know you've lost too much weight, and I've got the same reddish/purplish circles under my eyes- heck, they take up half my face it seems! So don't be too hard on yourself. I'm sure you're still a very attractive woman. If I use any make-up, it's for those undereye circles...and don't forget to count your 'you know what'!

Cheers,

Jana

Jana, you are too kind. Those photos were taken pre-dsyautonomia when I had at least another 18lbs on me. I fear that I'll just waste away.

Yes, I know what to count! LOL

Thanks for being so sweet and thoughtful.

I'll talk to you during the week.

Hugs,

Rene

[yogini]

This question is hard to answer. When I first got sick, my complexion turned sort of grayish. I think if someone just met me, they might not have known I was sick. But when I started to feel better, some people I know told me I looked much better and that my face had regained itscolor. Others didn't notice. I also gained about 10 lbs and have lost some of it.

[Lgamez3]

I look normal until I am feeling bad. Most people wouldn't notice, but when it gets bad, my boyfriend and my mother can tell by the look on my face they say. They say I look like I am in a daze of some sort. Other times, I look the same as usual

[mae]

Thank You all for participating, I have some similarities with some of your posts

Skin looks grayish no more shine

Lost weight

Thinner hair

Dazed look in eyes

Lost breast volume????

I know looks aren't everything but the changes sometimes upset me and I wish I could just be healthy looking at least. I didn't really notice it , until I seen some people leaving a DMV while I was entering and I overheard them say **** she looks like the walking Dead it crushed me and I haven't forgot it , I never heard anything negative about my appearance in my life and thats when I became angry and self conscience. I do ride around in the motorized scooters in the places that have them alot now and at first I was alittle uncomfortable , it doesn't matter me me anymore because its needed . I guess I'm dealing with alittle bit of low-self esteem something else to work through.

Mae

[Shimoda]

Not really....where the blood pools it gets redder sometimes but thats about it.

[fighting4health]

My appetite changes drastically causing me to either gain or lose weight for months at a time. I flip-flop between a size 0 and 8. I've dyed my brunette hair blond to hide the hair loss.

[janiedelite]

My appearance hasn't changed dramatically either, but those who know me know when I'm not feeling well because I'm very quiet. My arms and legs change colors, and I feel a little conspicuous wearing abdominal and leg compression. I've grown my hair out so that I can just put it in a braid each day as standing in front of the mirror to fix it is too difficult. I carry my seat cane with me. My skin burns, especially on my hands, feet and face, so putting on makeup is irritating and I wear birkenstocks year-round as closed shoes make my feet hot and they burn more. I've lost much of my muscle mass and I weigh the same as I did pre-POTS, but I'm a couple sizes larger because I'm not as compact anymore.

I used to really enjoy wearing trendy clothes, have stylish hair, wear full makeup daily, and be pretty thin. Those things made me really happy. Now I'm happy if I can do some housework, go for a walk, and make dinner!

[pat57]

I put that my appearance hasn't changed, but folks can tell when I'm having a drop in my BP because I get pale and weak.

[BelieverEM]

I don't look sick, but gained a ton of weight/ lost a lot of muscle, as I became less and less able to be up and around (now, I walk to the bathroom and feel like I'm going to pass out).