Do You Think You Look Healthy?

[Guest Hanice]

When you look in the mirror, do you see a healthy looking person? I know we all get the classic "but you look so good" from sceptical people. But do you see your self the same? I don't, I see a messed up young girl. My eyes seem very suffered and unfocussed. My skin tone seems a bit off and I just look like SOMETHINGS wrong.

No one else sees it though.

[Guest Alex]

As one of my IVIG nurses told me during my first infusion two weeks ago - I look good on paper.

I definitely don't look sick. Never judge a book by its cover though...

Alex

[Guest Hanice]

I look sick (physically) to MYSELF. No one else can see what I see.

[Racer]

I get the exact opposite... "you need to start eating", "you are way to skinny", "why dont you eat?", "you need to start lifting weights", "you have lost to much weight", "are you on drugs", "what medications are they giving you", etc... I know I am sickly looking. I understand I am 30 pounds underweight. I understand I look like I am daze and confused. I dont know why people think they need to tell me? Then to make things worse, they always want to give me there opinion on what I need to do to cure myself... "you need to stop taking all that medication", "stop seeing so many doctors", "start eating better"...

When I look in the mirror, I have a hard time seeing a "sick" person. I have had disabilities my whole life, so I have never known anything other. I never looked into the mirror and thought I looked disabled. It is just something natural when you have lived your whole life with it, it dosnt define you in that way. Having a "illness" is different, even after a couple years it is still new to me, it is hard to accept. I understand I might look sick to people, but I cant look into a mirror and see a "sick" person anymore then I can see a "disabled" person. Labels are something placed on cans and jars stuffed away in your cabinets. They might describe your struggles, but they don't define you as a person

Anyway, just saying, people will be ignorant regardless, so if they say you look good, mise well take it as a compliment when you can

[khaarina]

I think the problem is that many of us look healthy at first glance. People would have to look more closely, and know what to look for, if they wanted to see the changes in my physical appearance, the bulging bright blue veins, the excessive sweating, the unbalanced pupil dilation, the way my weight is distributed differently since my thyroid and other hormones got out of whack, but most people make judgements based upon their first impression, they don't bother to look deeper. Of course we don't actually want to look sick, but I am sure as **** sick of having to prove to people (doctors included) that I really am sick.

[Terrier]

I look sick to me and maybe to people who've known me a really long time. I've got paler and paler over the years and my skin is a real mess up close, this with someone who got through their teenage years basically trouble-free that way!

I guess a stranger maybe wouldn't pick me out on the street as an 'ill-looking person' but they definitely wouldn't pick me out as an especially healthy-looking one either.

[YolaInBlue]

I get "you look good" from people that hardly know me or see me for the first time. My closest friends notice that I've changed a lot in a year. They told me that.

I am very pale, look tired most of the time, move slowly (I was very energetic before), lost my muscles (that hurts, I was a fitness instructor). During flare ups I loose weight, my hair falls out, my skin doesn't have a glow and is dry, dry eyes, dry lips, often dilated pupils (or just one). I don't see a healthy me looking in the mirror.

[lejones1]

During flare ups, I look pretty bad. I'm already skinny, but losing a few pounds pushes me into bony territory. My skin gets super pale and I get terrible dark circles. I can't stand light so I wear sunglasses a lot. In photos from those periods, I look really glassy eyed, like I have the flu. And I move weirdly - slow shuffling. I'm pretty home bound then but if I go out to the doctor, I imagine I look like a sickly little mole that's emerged from the ground. (And my family has confirmed this as an accurate description!)

On the bright side, during better times I even think I look normal! The only thing I notice in myself is really dry skin.

[looneymom]

My son does look sick and doctors have made that comment to me. At times he looks really pale and I can tell usually first thing in the morning what kind of a day it's going to be.

Rachel

[Becia]

Yeah, I get that a lot. I finally told one friend who keeps telling me "you look perky, you look fine, etc" that if he truly we what I felt like he would be second guessing himself before lavishing those comments on me. To the people around me constantly, who know the look I get before I pass out, or when something is triggering me, I look as good as POTS can look, in their words. I am pale, I have oily skin because it takes so much effort to wash my face every morning and night (and I just remembered what's I forgot at the store yesterday... Biore face wipes!), my hair is a mess under my scarf because I don't have the energy to take a shower in the am and fix it t where it lays down. I'm uncomfortable in my clothes, my socks rub my ankles the wrong way, and frankly, if I could just sit in a hot bubble bath, I keep thinking I would feel better and look better. Well, maybe not a hot bubble bath, but a girl can dream!

I do my hardest to put on a brave front for those not used to being around me. And frankly, I'm a girl, so every now and then, do like to break out of my normal track pants and t shirt routine, and wear some nice jeans, or a nice dress. I like to try to do whatever it takes to feel like a human, and not feel like a prisoner to my body. Sometimes I succeed, other times I fall flat on my face, literally.

Do I look healthy to myself? No. Do I get tired of explaining to others that I might look good, but if you knew the struggle I went through to get this way... Yeah. Some get it, some don't.

[Joann]

Like other posters, during flares I look pretty darn awful. Lose more weight, pale, hair loss and hair is just yuck, and people say they can see the pain in my face and eyes. I usually have some dark circles below the eyes. Oh, and my eyes become even more blood shot and the whites of my eyes seem to not look so white.

But other times I have begun to look better, when I am feeling better I gain some weight, begin to look better and take an interest in how I look (because during a flare who has the energy or cares about how you look). Had someone ask if I was feeling better because my hair looked so much healthier and my coloring was better "skin was glowing". Of course, then the current flare began and my hair went kaput! But even when I am gong thru a good patch I still don't look like I used to before this. I have always looked young for my age but these last 2 years I have aged a bunch.

People who don't know me well, think I look good. Doctors will say you look good and those doctors that know me, think i look great in the summer, but then the one said maybe its because you have gotten so much sun. So my tan makes me look healthy?

[Terrier]

You've reminded me there Joann, although I think I look kind of ill people generally seem to think I look much younger than I am. I'm 31 and still get asked for ID to buy alcohol most of the time which I guess is probably pretty unusual for a guy. It's funny when I feel like such an old man!

I once read Junky by William Burroughs and there's a section in that that I always remembered, he had this theory that addicts back then looked much younger than their years because their bodies were constantly under stress, going through crashes and recoveries, and that actually had some sort of regenerative effect on them. Sounds counterintuitive but maybe there's a grain of truth in there somewhere.

[AshleyPooh]

I definitely think I look unhealthy, and when people around me are honest, they say I do too. My pale (but olive) skin usually looks a bit sickly, and the dark circles under my eyes are ridiculously bad. I always say I should be a cast member for that show, The Walking Dead..... as a zombie. I guess it has something to do with blood flow/ blood pressure, but sure wish it would go away. As for the glossy eyed look LOL i know exactly what you mean. I usually have a dazed and confused look on my face, like a spacing out type feeling. I know it probably makes me seem dumb and/or slow, but there's nothing I can do about it.

Definitely starting to realize that 'fixing' my problem isn't as easy as eating salt and fluids and taking my meds. It might help ease the symptoms, but I don't often feel completely symptom free.

Then again, I need more tests too. At the very least a vitamin workup , and hormone checks.

[Cala]

I think we are our own worst critics!

Do I look healthy? Probably to someone who doesn't know me I look fine. To myself I can see the damage this condition does to me but I do try to go easy on myself with the criticism. Some days it's impossible and I just avoid the mirrors LOL

On a totally side note here... Racer, I know you don't know me Hon but please...please limit your contact with people that tell you things that only make you feel worse. And try not to let comments that downplay your doctors care. I can't stress this enough.

[Guest Hanice]

Cala

That's one of the best advices you can give to anyone, ever! I stopped talking to my mom and my brother and a friend for that reason! Talk to ppl that that put your spirits high, not people that put you down! I honestly wish I would've done that earlier. Family isnt always blood.

[HopeSprings]

I understand I might look sick to people, but I cant look into a mirror and see a "sick" person anymore then I can see a "disabled" person. Labels are something placed on cans and jars stuffed away in your cabinets. They might describe your struggles, but they don't define you as a person

I love this and wish I could embrace it. I actually feel taken over by this illness. I can't do most of the things that defined who I was so now I'm just this sick person and don't feel like much else. My sole purpose in life (with the exception of being a good mother to my children) has been to find out what is wrong with me and get it fixed.

I get unsolicited advice too, Racer about things I "could be doing" to make myself better. I'm pretty sure if there were easy answers we would have found them by now. So annoying.

And to answer the original question, I agree with what most of you said that maybe from afar I look okay, but if you look closely there are definite signs of poor health.

[Racer]

I love this and wish I could embrace it. I actually feel taken over by this illness. I can't do most of the things that defined who I was so now I'm just this sick person and don't feel like much else. My sole purpose in life (with the exception of being a good mother to my children) has been to find out what is wrong with me and get it fixed.

I highlighted a part that I want to point out. The part of my reply about "labels" is a variation of a common saying that circulates around autism/aspergers communities. There is often talk about being labeled, and how those labels don't define a person. What skills you have, used to have, or want to achieve does not define you. Hobbies, occupation, wealth, social status, disability... these do not define people. What defines you is your core values, your core qualities... It is who you are as a person. For instance, I am sure you are a loving mother, and this might be one of a long list of things that define you. Being sick is a label, and labels don't define you

I am just remembering, one thing I have seen suggested before, is to make up a list of qualities that define you. You could start out small and add things over time. You could pin the list to the wall, or keep in a safe private place. When you are feeling down, you get out that list to remind you who you are

Now if I could only follow my own advice

[HopeSprings]

You are so right. We're still the same person inside even if we can't do all the things we want. Thank you for that reminder!

[brethor9]

I get the "you look good" all the time and really I find it incredibly annoying so now when people say it I usually reply with "well it's amazing what steroids can cover up ;)" because that is the honest truth.....on the inside I feel like absolute crap every day.....this is an illness that mainly attacks the inside not the outside of our bodies. Only the people who know me extremely well or who suffer from illness themselves can tell how sick I am. My hubby once said to an unbelieving dr that "it's not her fault she is pretty.....she will be pretty even on her deathbed......so maybe you need to look past that and take her seriously" lol if only!

Bren

[Anoj]

i look fine to others, but i can see things in myself that no one else seems to notice. just the other day, i was watching someone walk into my building at work and thought how energetic and spritely they looked. i walk much slower and know that i look "haggard." it made me sad seeing the other person with health and life and knowing that i don't have that. every physical act is a monumental strain to me. i have gained a lot of weight after POTS, so i don't look malnourished. i just look older, fat and haggard. i once was pretty attractive, so it's been depressing.

what's even more annoying is that i have been open about my condition to my friends and family, and they still don't seem to UNDERSTAND how much i limit my activities and why. if i say i'm not going somewhere, they ask, "why? are you not feeling good?" i feel average or "normal" for me, but i'm not driving an hour to go to an all-night party, either! it just makes me angry. why would someone with POTS go party all night. does that mean i don't feel good today? no. it means i have POTS, and i don't do the things i used to do anymore. i don't know why, after explaining my condition to friends/family over and over again they don't get it. they don't understand why i'm not at every birthday party, etc. oh, i know i should be understanding and patient with them, but i don't feel like it today.

[sue1234]

I look tired. No matter if I sleep good that night, I still look tired the next day. I am not ever really sleepy, but just everyday fatigued. My skin looks rough, never have a healthy glow. And, I walk bent slightly forward from 7 years of sitting with my legs elevated most of my waking hours. That is something I'm working on, trying to stand straight and tall when upright, and it is really straining my tendons(?) somewhere in my pelvic girdle.

[Confusedguy]

My Autoimmune Dysautonomia does not impact how I look UNLESS i'm having an attack/symptoms. When I'm having an episode my kids can spot it a mike away. As to how I feel, thats another story, I "feel" like a 95 yr old man. Looks can be very diseving.

[Katybug]

Mine depends on the day. If I am having an acute episodes with tremors and dizziness and presyncope, I get pale but also flush and clammy and astute people can tell. Those that were close to me prior to all of this can tell that I don't look right a lot of the time. In fact, my mother and stepfather can sometimes tell I'm about to have an acute attack before I can because I get the pale and flush at the same time look a few minutes before I can feel the other symptoms. Mostly, people who don't know me have no clue.

[E Soskis]

In the past month, I've been in the hospital three times: sepsis requiring removal of all of my central lines and infusaports; necklace graft surgery with resultant further sepsis; and just this week, another trip for a new type of sepsis and blood infections- I'm now administering IV antibiotics to myself every day for the next 21 days - I've been sick as a dog yet, each and every visitor has assured me I don't look "sick" - If I continue to hear how wonderful I look and that I can't possibly be sick, I'm going to start replying that I'm just making it all up - I check into the hospital for a vacation and I hold the thermometer under hot water in order to produce a temperature of 103 or higher! Perhaps folks are just trying to be nice but, it devalues my feelings and dismisses my illnesses as "fictional". A simple "sorry you're feeling so bad" would be nice to hear instead of "gee - you don't look sick at all".

[okiedokie123]

This is why I tell healthcare professionals. I look good IN person but horrible ON paper.