Do You Tell Anyone About Your Dysatonomia

[kayjay]

I just was wondering if anyone else is sort of in "hiding?". I really don't want people to know that I have a problem ( I hate attention and I hate trying to explain POTS).

I can't work, and I am home most of the time. My mom drives me to the dr.'s and such, I can drive a little but not far.

I really am a private person and I wonder who else feels this way... or am I crazy? An old friend from middle school wants to get together and all I can think of is how do I tell ehr I have some weird problems? Even if I can make it to starbucks or something. Anyway I know this is weird but I wanted to know if anyone else feels the same way.

Even my in-laws don't know I have a problem-we don't see them much- I just had to get though 1 dinner this year and my husband covers for me.

[MamaTrain]

I find myself just not wanting to talk about it to people who dont get it. Some of my friends are like "they still dont know what's wrong with you?" I only discuss with my friends that I know believe me and are just as upset that the real KC has been stolen from them! LOL!

[MomtoGiuliana]

I find it too complicated to explain. So in that sense I hide it. Certain things it causes embarass me a little but I also don't want to go into what would have to be a several sentence explanation. I guess for me the most obvious thing is that I do not drink alcohol. In social settings it can be a little awkward feeling (to me) to order up water while everyone else is drinking a glass of wine, but oh well. I've also been sort of embarrassed or uncomfortable at times by the fact that I get winded so easily. Anyway, I think this is why POTS is considered an "invisible illess". It makes it harder in many ways.

[EarthMother]

I went to elaborate lengths to hide my illness for years. I found it exhausting. When I finally got a formal POTS diagnosis, I felt better about trying to explain my situation to people at work. That was a help. For the last few years that I was able to work folks were great about having committee meetings in easy access locations, having warm and cold beverages on hand and even couches for me to recline as helpful. In the last year of my career we even did several video meetings or teleconferences to try and keep me in the saddle for as long as I could.

But even that became too much and by 2007 I had to leave my job. After that I decided I wasn't going to hide any of it any longer. The POTS, the panic surges, the extent to which my life has impacted my family ... I'm up front with everyone. Sure ... I lost some folks along the way. Not the least of which was my own mother who simply withdrew completely from my life a year ago. There are friends who understand, friends who don't understand, people who gossip and make up their own stories and some strange folks who find my blog an inspiration -- LOL

Bottom line ... I can't control what any one thinks, believes or assumes either with or without accurate information. But for me, I feel as if I am in integrity with my situation and my word if I at least put it out there and say honestly ... "No, I can't go to lunch with you, I'm having a darn hard time getting out at all these days because the dysautonomia is a real challenge on my body."

As I said, for me that's the path of least resistence. I feel GOOD when I'm up front and out of the closet. I think doing things to reduce our stress is crucial in our healing. So if it is HARDER for some to share that information then it would be counter-productive -- whatever works for you. Whatever makes your life easier to handle in the moment and down the line.

[erikainorlando]

It depends...on many factors so I don't always go into it. Sometimes it just isn't worth the energy. But I am not a private person so it doesn't bother me to tell people for the most part...but they really don't understand.

I do get embarrassed tho at the being winded, can't stand, have to prop feet up, sweating, got to go home...I sm so ill. But I think we find our way.

However, it at the moment it is what is...and there is no shame in not being well.

Erika

[scarfgirl]

I go back and forth. Sometimes I hide it for as long as possible, other times I practically blurt it out as soon as I meet people. I've never figured out when is a good time to bring my illness up without having to deal with awkward explanations or questions. If only POTS were more well known....or at least remotely pronounceable.

For me the worst is still the "So what do you do for a living?" question. I HATE that question.

[ericajay]

I am always trying to figure out when and how to talk about it.

Lately I feel like I'm talking about it more and more, because I am feeling worse and need to ask people for help more often. Once I not that I'm in the middle of explaining myself, I find that I am wishing that I had kept people up to date more often, so as not to start at the beginning all the time- it's so much easier to have someone who gets it, who I can just say "I'm having a POTSy day" and they know what I mean.

It definately is a two-sided coin, though- though it helps to have people know what my illness is, I also hate it when people assume that I can't do something- or act like I'm an invalid- I get to decide what I can and can't do.

But I feel different about it every day- and I appreciate my friends who won't ask how I am unless I want them too, and will let me pretend I am fine when I need to, and will support me when I can't pretend.

[erik]

Unless you wish to keep it totally "top secret" kind of thing, telling a stranger or someone that is a more distant friend/associate can be a cathartic thing and kind of safer feeling since if they react weird it doesn't matter much. I told a fellow I used to do athletic stuff with a little about it and felt pretty safe doing so... he kindly came up with a rather cool suggestion on helping weird hydration things beyond just electrolytes and such (insight from his athlete side... a Hammer Nutrition product). If instead he had reacted less helpful (or if he now has some private doubts about me) it doesn't affect me... but it felt nice to go ahead and mention it. If it causes too much distress though, some tactful bending of the truth seems allowable to me... like offering something sort of similar that someone can digest easier, like "migraine" complications, a mild hormone deficiency that is tough to treat, being placed under house arrest for insider trading violations... you know, the common stuff people can relate to better.

[bizbiz]

I dont walk up to stangers and tell them...but I do tell most people. I think I do this so that if I start acting strangely (like needing to sit down RIGHT NOW, or having to drop everything in the grocery shop and just leave or simply if I am having a bad brain fog day and can't get my words our properly) people seem to understand what is going on better. The onlypart I hate is explaining the illness and symptoms to them, because as you all know, sometimes it is not so straightforward.

I guess it is kind of a pride thing, although in the opposite way of most of you who dont tell - you don't tell because you don't want attention / people feeling sorry for you / or whatever reason, where as I tell because I would hate for people to think I was dumb or strange if I was having a bad day and said or did something 'brain-foggy' or stupid.

[pat57]

I do tell people but very breifly and matter of factly. I guarentee they will freak out if you start bobbing and weaving or (better yet) hitting the deck. So I tell em- look sometimes I collaspe- its nothing to worry about. - I recover in 15 seconds. My explaination is, my BP gets too low and when I lay down the BP goes back up.

Works for me.

It ocurrs to me that they think its justfied for them to freak out but at the same time doubt the

day to day constant struggle we claim. Generally speaking.......

[sugartwin]

I call it my 'regular person' drag. On a day that I don't require my cane, I look the same as everyone else, so I try to act the same. Grocery shopping, I note how much easier it would be for me if I could park in the handicapped parking. The elevator is there, but there's no reason why a healthy looking woman can't take the stairs so I do. And on the way out up the stairs...with the groceries. I hide how short of breath I am until the car, where I can recline and pant and sweat to my heart's content.

I am very private. When people ask, I tell them, but many times that's the last time we talk. I suppose no one wants to think that their young and healthy could abruptly end. I lived in Chicago for three years but there's only a couple people who I still talk to there. I hesitate to meet new people; I don't want to be in the position of explaining the whole thing if I suddenly start hyperventilating and pouring sweat. I want to visit everyone, but if I get sick, I don't want them to have to babysit me.

It's very lonely.

[lissy]

Hello all,

I have a hard time telling people my condition because for so long with family no-one ever took my illness seriously kind of the same as how the doctors have treated most of us... Even after finding out what is wrong with me they still don't take it serious . I went to in-laws for thanksgiving and was talking to his other family members about childcare and normal things and my husband said " I need to get her some help shes really sick " and one person said " Your sick I said yes and she laughed and said whats wrong with you? I said I have a conditoin that causes high heart rate and blood pressure problems when I stand and I'm always extremelIy fatigue. She just smiled and laughed and everyone was just looking at me like it was a joke like how are you really sick . I mean who goes to CLeveland Clinic if there not ill???? I always feel like I have to prove my condition or feel ashamed because no-one gets it. I'm tired of talking about it no-one cares anyway.....besides you all that know how it feels. I wish I had something like a business card to just hand out with the desciption and symptoms and if anyone asks how am I doing I'll just hand'em that, I think I'll really do it.

One more thing when I go to Dept.Stores and ride those scooters I wish I had a flashing hat on my head explaining ITS MY RIGHT I need this scooter:P

Lissy

[valliali]

I am definitely a hider. I don't tell anyone, and the few people who do know about it, I do anything possible to change the subject when it comes up. I think it's because I am aware that most people around me think illnesses like POTS and CFS and the like are bogus. I did too, honestly, before I myself got sick. The other day I was at a volunteer thing I do, and there is a girl there who has been sick for awhile. No one really knows what is going on with her, and one of the DOCTORS I was volunteering with said, "It must be Chronic fatigue syndrome or one of those things. You know, the illnesses that give you an excuse for everything." I found that I was so personally offended, but realized she didn't know any better because I look and can seem very healthy and normal. But I know that is the prevailing attitude most people have, especially where I live. I think that telling people about my illness makes me weak and I end up feeling very, very ashamed. This is not healthy for me because then I am stuck lying and trying to cover up, so someday I would love to live in a nice, small town where people get to know and understand others in their community. Perhaps, as a city girl who knows no better, this is just an unrealistic dream!

[Brye]

I share! I've been battling this for almost 2 years now and I need the support of my friends and family. I try not to dwell on it or complain a lot. They know how hard I'm working to improve my health. But when I need a hand I send out a crisis e-mail and my friends know how difficult this has been for me and are very helpful!! I have nothing to hide and am not emberassed about it! This is just a bad time in my life and I'm dealing with it the best I can. Everyone has issues in their life from time to time and sometimes we all need some extra help. I also am a fainter and I think it's cruel not to tell. A perfectly healthy looking person passing out near me would be terrifying ... especially if I didn't know it was a common occurance. I also need people to know about my driving limitations. There is a reason I won't carpool with my friends and if they know the truth I don't have to make up excuses!

Brye

[ladyt]

hi..

i was told ower and ower by my docs that i ust had to ignore my symtoms and fainting.. so that was what i did. And exept for the fainting (a bitt hard to hide, but posible if no one sees u go down, then u can say u fell if u are not fainted for a long time ).

Last couple of years i have tryed to be more open. Tryed is the word here. I use mostly wheelcair when out, and i have one for indoors too.

But when some pepole visit, well i use to hide it. now i ust dont use it when they see. Not very wise. So i try to be more open. So if people ask question i mosly answer. But not always. I ust dont whant to defend my self, and this illnes is so hard to explain.

This is one of the areaes i try to change, to find ways to deal whit it better. Find i way to make friends and inlaws to understand. But illnes is not an easy topic.

[tinkerbella]

Mine is easy as I walk with a crutch or walker till the moterized wheel chair comes and the approval just came in the mail. People walk right up to me and ask what is wrong with your leg? Well they asked and you never assume, so I get on my little band wagon and do a little teaching session where ever we are. Other times people see me with that glazed over look in my eye and ask if I'm ok and I say no and need help. Other times I 'm found so breathless and needed help. I actually made one of my best friends that way. So, I'm an outie and just wait till my chair comes. Pleople can't keep their mouths shut and want to know what is wrong with me cause I look too good to be sick. Otherwise known as nosey! lol

bellamia~

[Nikki]

I feel the same way. People who are close to be know about it, and I'm fine with some people finding out if I know them well but for example - when I'm in a store with my dad or something and he's talking to someone he knows, he'll (out of concern, I know) ask if I'm doing alright if we're standing and talking awhile I just feel like ugh why did you have to ask me that while people are standing right with us. I know there's nothing to be ashamed of, really..but I still don't go around talking about it unless something happens where I need to explain myself I guess lol.

[erik]

Yeah. Hiding things could be helpful for employment issues. Having the word out there about a "chronic illness" isn't a plus on a resume (including "word of mouth" behind the scenes information). Another sad overtone.

[juliegee]

What a great thread! I think we've "chatted" about this before.

I tell on a "need-to-know-basis" and like Pat57, I'm very matter of fact. I've found that if you go into a lot of detail, people glaze over and start looking above me- rather than at me- Bad sign. Very occasionally, folks ask additional questions which I'm happy to answer- very succinctly.

I am so much more than my illness. It is a small part of who I am- easy to say as I'm pretty functional right now. It's much harder for folks who are more disabled....I get that.

I think lying or hiding who we are is NEVER a good idea. It denotes shame and illness is nothing to be ashamed about. It "happened" to us, it's not something we chose. That being said, sharing too much, too soon, can make us feel vulnerable. That's not good either. That's why I share with folks who NEED or WANT to know. I can't control what anyone thinks of me, but I can control when and what information I chose to share that makes me feel vulnerable. It's definitely a balancing act.

Folks rarely respond with the empathy I feel I deserve. This illness is too complicated to easily understand. I know it doesn't mean that they don't care. They truly don't get it. The most healing thing for me is to understand that we are all equally yoked. EVERYBODY is dealing with something. We don't know everyone's challenges. This illness has definitely made me more empathetic to everyone.

Please keep sharing your experiences. I think I may explore this further in a newsletter article.

Julie

[ladyt]

hi..

this is an intresting tread.. and i wish i could read and respond better to it.. but i have had an awfull total potsy time latly.. started whit my period and it ust would lett go.. (i never gett e 0 potsy day) but latly i have been abel to do litle some days...

Were i live its counsiderd very inpolite to ask questions about others healt and why u are in wheelcair.. so very few do.. some people asking i ratter like, but some i dont.. its all in the way an how the do it.. Like i hop i are going to ditch that chair soon, ust figth harder etcetc..

i had lots on my mind about it.. but i have to stopp now..

wish u best...

[Detrick7]

I did not tell anyone about my symptoms for many years (about 15). I thought it was weird that I would almost faint (don't actually faint), many times twitching and with nausea, but didn't tell people or doctors because I didn't want strange looks. I finally told my wife, who of course wanted me to go to the doctor. Classic case of going to many doctors and lots of weird looks. Finally after being diagnosed with NCS, I am much more willing to talk to people about it, at least the condition has a name. However, I have found that still trying to explain to people gets lots of strange looks, so I only talk about it with close friends and family. This forum is nice because you know everyone is going through something similar and makes it easy to talk about.

[MommytoSJEA]

It all depends if and when I tell people. Its not that I'm a private person, becasue I'm not...lol (My hubby says I have the least amount of tact then anyone else he knows ) It's just I hate that I have no clue what your talking about look. When asked I kinda just joke it off with I have a bumb ticker which doesnt beat right and it cause me to faint. Most people get that. Not quite true.....but they get it.

~Kelli

[Tammy]

I don't tell anyone who doesn't know me extremely well and who I can trust to not be judgemental about a disorder that they do not understand or can't relate to. I guess it's because I've met people who I barely know who have shared their issues with me right off the bat, and it just kind of freaks me out when they do this. My in-laws have some issues with depression, and they are so open about it and I honestly wish they wouldn't talk about it so much. So I know there has to be others who are like me and would rather not know, so I try to do them a favor by not sharing less than positive conversations However, I do use support sites to share what I'm experiencing because it's a 'safe' place to do so... because we all need to vent, share, and learn about life with this illness at times.

As a side note, if it's people who, for safety reasons, need to know, especially for those with fainting as a symptoms, it is best to share the fact that at times fainting is possible and what they should do if it happens, (i.e., not trying to sit you back up, etc. ) without saying it in a way that becomes 'personal'.

[futurehope]

This is how I view "sharing" of my personal medical problems.........

There are many people we are in contact with that have medical issues. Do they discuss them? Obviously, when someone asks, you explain in an easy-to-understand manner. If someone does not ask, and there is no need whatsoever for me to bring up the issue, I don't.

When I was working (in the past) at one of my non-government jobs, I said as little as possible, ever. I did not want to be "RIFFED" (reduction in force). At my government job, I waited a long time and had a good reputation before I divulged my health issues. Obviously, I had to tell them I when became incapable of working.

But, in general, unless something is obvious such as a broken leg or a wheelchair, people tend not to divulge their personal stuff unless they are asked.

I've said this before........I, myself, prefer to "forget" my medical issues and to "take a break" from thinking about me, me, me......and the last thing I want is for someone to solicitously (with pity in their voice), be asking me "how are you?", when I'd rather talk about something else.

I am not trying to convince everyone on here to follow what I have chosen, especially if they are in a wheelchair and they need assistance. My opinions are for me only and for my medical condition at this time.

I will not be quiet if it puts me in danger or if I might have an incident.

[kayjay]

Thank you all for sharing. I really care too much what other people think! I know I am not lazy and I know I am not really a "flake"- just when I stand. Maybe POTS will "grow me up" to the point where I don't give a rip about what anyone thinks!

Lots of wisdom your posts but I am also glad that I am not the only one who struggles with this. I have to use a seat cane if I go anywhere and people look at me and I have gotten some comments ( I am 36 and well looking due to a little sunless tanner . ... helps hide those dark circles- but my daughter tells me my lips still go white!

I need to be thankful for what I can do and the fact that I am still alive- things were touch and go for me last March and April... I forget to be grateful because that time was such a blurr.

Weird I want EVERYONE to know about Dysautonmia because people are suffering undiagnosed. It is really crazy that it took me almost 11 years and almost "kicking the bucket" to get help!

I just don't want to be the local "poster child" for this disorder... it is too confusing!

THANK YOU AGAIN FOR SHARING!