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"well At Least You Have Your Health!"


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For the most part, I look and act like a healthy 29-year-old woman. POTS affects me daily, but not enough to disable me, and the many ways I've had to modify my life are not necessarily obvious to others. For me, POTS followed a very long and dangerous illness, and I have other things going on that seem to be connected (unresolved thyroid problems, food allergies, etc). I am grateful that my health has improved and I am grateful to be doing as well as I am, but I don't know that I would consider myself a person in good or excellent health, and I definitely feel like I have a complicated and difficult relationship with my health and have for years.

I often get comments from people who know me about how lucky I am to be young and healthy. Co-workers will tell me I should enjoy my health while I have it, and then go on to complain about their back pain, etc. People will say things like, "At least you have your health, that's the most important thing." People have told me to "value my health while I'm young;" if the conversation turns to someone else who is very ill with something serious, people will say, "Boy, it really makes you value your health, doesn't it?"

When these things are said I usually just smile and nod, and change the subject. But these comments hurt me - because I don't have my health in a lot of ways, and although things could be much worse and I'm grateful that they're not, it still hurts to know that "carefree" gratitude will never be mind to have. When people say "health is the most important thing" it almost feels like they are rubbing salt in a hidden wound, since in many ways I feel like that "most important thing" is forever elusive to me. It also hurts when people tell me to value my health, since I feel like I have fought so hard to maintain the health I do have, and I am certainly not cavalier about my health.

I'm not sure there is anything I can say in response that wouldn't sound whiny - since I am acutely aware that I am far better off than many other people, and I can only imagine how hard being completely disabled would be. I don't necessarily want the sympathy or pity of others, and I suppose in one way I'm glad that my struggles are not so obvious to other people. But I still wish that people would think before saying things like this -- I'm sure I'm not the only one who has been hurt by these assuming comments.

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When anyone who is not like me tells me I'm "like" him or her, I make sure that person knows I don't think he or she is "like" me.

I don't really dare to ask but honestly, if I'm normal, I want to know why anybody goes out on a hot day and why anyone would ever sit with their legs down and why anyone would eat those things that make make people so sick that they have to stay up all night or urinate all the time? Why don't people wear cooling vests? Shouldn't everyone wear one? Why do people have such slow heart rates? Is that a disease? How do they fly?

With regard to diseases, I should say -- aw, come one, every "normal" person feels like he's dying most of the day and there's no real difference in perception of disease between the "normal" state of a normal person and the "dreaded disease" sick state of a "normal" person so what are we talking about?

------

As far as the trite references, the person who tells me (in some other language) to "be healthy" should know that I understand it as a reference to my name that she wants me to change (the word for "healthy" would make a nice name) -- because otherwise, there is no way for me to follow her advice.

What's wrong with "Try to enjoy life even though you're suffering in the conditions the rest of the population lives in."? And "You're a pretty woman but you sure look green/grey/awful" and "That sounds terrible"?

I think we'd be a lot better off if we lived with our own kind ... :(

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O th' material! I am recently disabled and the symptoms have been getting worse, but I worked for nearly 7 years with POTS and I have heard everything in the world. Here's my favorites

1. From a family member: "So....now it's your turn....so... you DO like men don't you? You need to GET OUT MORE so you can find Mr. Wonderful" (GRRR 50 hours a week plus school is not "out"?)

2. From a co-worker: "You need to just come with me and exercise a half hour every day during lunch, no excuses. If you exercised like I do, you would just forget about this POTS thing" also said "You would feel better if you cut down on your salt intake so you need to stay away from canned vegetables" (kill)

3. From a family member: "You need to learn patience" (exSQUEEZEme?)

4. From a neighbor: "Did they EVER find out what was wrong with you? I hear you've decided to be a Lady of Leisure" (I guess you could call dead people leisurely also, plus I've told you my diagnosis 8 times!)

5. From a coworker: "See, I'm not like you, I never call in sick. I think the last time I call in was 3 years ago, and I have a big medical problem- I have Irritable Bowel Syndrome and you don't know sick until you have that" (um, right. yeah, boy not like every single person in America has that and It's so fabulous the way you can put your poo problems up against all the horrid illnesses of the world and call them even.. can I get you a wheelchair?)

Well then, that was therapeutic.

It's amazing that people think you have to be old to be sick. Just tell them your "true age" is 89 due to your illness. If all else fails, place an emesis basin on your desk and carry it around with you- no one will bug you and no one will steal your lunch out of the work fridge.

Kits :(

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Kits

Holy cow! I thought I was the only sick person in the world who had been accused of being gay - I lay in bed with my mystery illness (instead of Brad Pitt) while all of my friends lived full lives and got married. My sister and sister-in-law decided that if I REALLY liked men I would have gone out and got myself one.

To be honest, I thought I'd be dead by now and it wouldn't matter.

The other good'n was also from my sister-in-law - she excitedly called me last year to tell me that she knew what was wrong with me: I was just going through menopause. She couldn't accept that I had been ill for the previous 25 years, but menopause was an acceptable explanation for the symptoms I was having at this time. Nope, I'm not menopausal...

Ah well.

Dianne

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Jump,

I am going to assume that the persons who make these comments to you are unaware of your daily difficulties, right?

It is up to you how much information about your troubles that you want to share.

I do not usually go into details about my day-to-day difficulties, but, at appropriate times, I've mentioned that I feel like I'm 75 years old.....I'm not, or that I am unable to ......

So, in my own sly ways, I've managed to convey to people that my healthy demeanor is deceiving.

You cannot get mad at people for saying something about your health when they really have no clue. I'm sure you've learned the hard way to monitor what you say about others, as looks are deceiving.

Unfortunately, people say things that they shouldn't say all the time, and they make false assumptions about others (like the assumption that you are healthy). Try to forgive them their ignorance, or remind them of their good fortune (like they are reminding you), but gently suggest that not everyone can share their blessing of good health. Some people may be suffering from a hidden illness, an emotional trauma, or a wayward child, all of which may be invisible.

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Hi Jump-

I so hear you re. the insensitivity of others :( . I am left wondering WHY so many people around you feel compelled to make these comments. I might say something like that to someone who seems down or complains frequently. I'm not necessarily suggesting that describes you, but consider it food for thought.

It is so frustrating when people around you make assumptions about you. Let them know your reality in a matter-of-fact way so they might better know you & understand why you are feeling down. In the short & long run, you will feel so much better. It takes so much energy to put up a front or wear a mask (Energy we don't have.)

I know you are looking for commiseration & trust me, I feel for you & have been there a zillion times. Over time, I've learned to let people know what I'm dealing with without making it a huge deal. It makes me feel more authentic and lets people around me know the real me.

Gentle Hugs-

Julie

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Kitsakatsa-- You are so funny - thanks for the laughs!!!!!!

Futurehope-- Such fantastic advice. Very true - no one really knows what anyone else is going through.

I struggle with this, and I agree with Macks Mom that being clear about what you can/can't do w/o making a big deal is a good plan. It does work for me - I find it easier to tell friends ahead of time what I may not be able to do - that way, if I flake out, they know why - also, when I am symptomatic, it embarasses me, so it's very hard for me to say anything at the time unless I have already explained it to that person.

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I feel compelled to add the thought that people can mistake a "look" they see in you as meaning that you are "sad", or "down", when the reality is that you are exhausted.

When people are tired, they may look depressed and not interact much, but the truth is, they are too tired to look otherwise, or to participate in office chit-chat.

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My usual response is "I wouldn't know" with a laugh. That usually throws most people off, if they're even paying attention. Because I love to talk about my health issues, and it usually starts with, "There's a reason for the hat and jacket".

I don't want pity, I hate pity. I want people to understand. Maybe one in five or ten might, but it's still one. I know I'm sick. People can see I am. I look frail and exhausted. I'm thin, I wear baggy clothing and a floppy hat. I have layers on in 90 degree weather. Obviously there are signs that aren't always physical, if one isn't too selfish to look.

I like to point these things out to people. Because I'm a writer. Because I'm a detailed viewer on life, I like to make people not take others at face value.

Of course, most people are going to make sweeping generalizations about me. I look like a fifteen year old. When I come flying into Wal-Mart with my quick strides on a good day, floppy hat tied at my neck with a ribbon I added myself, and jacket waving about my body like a cape, they're going to stare and wonder how I'm not sweltering. They're going to question the two or three sizes too big clothing. The rash on my face and the sunken look of my mismatched eyes. How one's not quite as open as the other and is it just a bit longer and lower, too?

If they really look, they'll see a limp. They'll see my hair is falling out and turning silver and thin. It's like silk, soft and wispy as spider thread. Recovering cancer patient, maybe? If they could see the way my bones protrude at my elbows or how thin my arms are then that would really win them over. I'm purple and veined and my skin is stretched.

But I'm smiling. So perhaps all those notions of illness aren't correct. Maybe I'm not sick. It's an illusion. I'm just weird. I have bad fashion and sense of dress. I get cold easily and I -is that a doll in my purse?- am just one of those strange people you were told not to hang around as a child.

So when I'm checking out and am asked how I am, I'll say "I'm here".

"Well, at least you've got your health!"

"[laugh] I wouldn't know! Hadn't had that for years!"

Which is usually followed by uncomfortable silence or a head tilt. Sometimes a smile or a pitiful look.

"It ***** when you're dying." \ "Kinda kills it when you can't get out in the sun." \ "But I guess it could get worse. 'least I can still walk!"

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I feel compelled to add the thought that people can mistake a "look" they see in you as meaning that you are "sad", or "down", when the reality is that you are exhausted.

When people are tired, they may look depressed and not interact much, but the truth is, they are too tired to look otherwise, or to participate in office chit-chat.

AMEN & good point!

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Lol, I don't think anyone's ever said that to me!

Sometimes they say "well, at least it's nothing serious!" when I try to explain POTS and that bothers me sometimes! Although to some extent it's true! :( It could be so much worse. However, it makes me feel so stupid when they imply that I'm being dramatic.

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Unfortunately, people say things that they shouldn't say all the time, and they make false assumptions about others (like the assumption that you are healthy). Try to forgive them their ignorance, or remind them of their good fortune (like they are reminding you), but gently suggest that not everyone can share their blessing of good health. Some people may be suffering from a hidden illness, an emotional trauma, or a wayward child, all of which may be invisible.

I agree with this totally. Is there anyone in this world that does not have a very difficult problem in some form or another?

That's why I get so confused when people make assumptions about me.

I try very hard not to make assumptions about anyone although I occasionally do and am usually right off the mark and proved wrong.

I hardly know what's going on with me to be in a position to judge what's happening to others -- things I can't see.

If people would generally start inquiring about the lives of the people they talk to and listen to their answers and STOP with all the assumptions we'd surely have a much nicer world to live in.

blue

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The other good'n was also from my sister-in-law - she excitedly called me last year to tell me that she knew what was wrong with me: I was just going through menopause.

Dianne

LOL! I keep trying to pick up on the male pharmacists because the pharmacy is the only place I hang out now! ;) I think I've done a hair flip so many times they think I have special needs...

I forgot to mention the best from my own dear Mom: it's similar to your apparently traumatic menopause. She called to say that she figured out that I had nervous system damage from changing the litterbox because now I have two cats AND I am single which means that I am the only one changing it.

Nice. I also thought that I would have died by now and all I could think was, my own mother now things that I so severely single that I will be the first one on earth to die of single status syndrome. I am such a spinster that I am sick because I have cats for children or whatever.

OMG!

Kits

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A sister called me yesterday to see how the vivit to the N had gone. Knowing this sister as I do, I wasn't about to go into any details but said that I left feeling very upset, that it was a waste of time and that I had to fight back tears as I left.

Her response: "You know there are a lot of people out there who are a lot worse off than you". That stung more than having nothing resolved with the N.

I said to her, "I once said to a good friend exactly what you just said to me. She answered, "You do not need to think that way. You are in very poor health and suffer as much as anyone else so don't put yourself down this way". My sister had no response but changed the subject.

mary p

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Know what I've noticed here? How many of you can find some humor in this!! Love the comment about picking up the pharmacist!! My daughter and I do the same thing sometimes. I called Liz, "Dizzy Lizzy" one time in front of a nurse and did she give me a stare!

Back to the subject at hand - I guess I don't understand why people can't have a little more compassion and think before they say something stupid? I had a neighbor who is a nurse say to me, "Well, at least your daughter doesn't have cancer!" That really hurt and to this day, I wish I wouldv'e told her how much that statement hurt. My daughter has missed out on 3 years of her life already and to dismiss it like that was horrible.

The funny thing about all of this is that the people who seem to understand the most are those who have loved ones sick with cancer or other illnesses. Until you've been through hard times, I don't think you can fully understand what it's like.

We've had people say hurtful things to us but we've also experienced many blessings from those who are close to us and not so close. I think those people stand out more in my mind than the others. I've also learned compassion and not to be so quick to judge others and above all to cherish my family.

I hope and pray that you can surround yourselves with people who will support you and hold you up, rather than bringing you down.

Brenda

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