People Who Think We're Exaggerating Our Symptoms

[Dizzysillyak]

I keep running into this. I missed a family re-union sunday because I simply can't stand or sit

for any length of time without having a petite mal and sob. Sure this isn't new but it's worse

right now.

One of my family members went off on me about going to the Mayo Clinic to see real doctors ... Bwaa ha ha ha ha ... Been there done that ..

And insisted that I was diagnosing myself which makes me an idiot. His words .. I Tried explaining

dysautonomia and using a bp / hr cuff but I think his ignorance here made him think I was just

obsessing..

That wasn't all but I'll skip the rest ...

We get along really well, so of course I argued right back even tho I was too exhausted for this nonsense.

Another family member I spoke with told me that she has petite mals and sob upon standing too.

As IF my symptoms were exactly like hers .. I had to explain to her that my legs get rubbery and my brain shuts down totally so being upright is not an option. I really don't think it sunk in even tho

she said her symptoms are transient.

She seems to feel the need to compare herself with me .. Meanwhile, she never lays down and rests until she reaches the point of exhaustion that any healthy person would after being on the go for days or weeks.

I know my family loves me, but I just get the feeling that this sort of judging goes on behind my back.

I've had plenty of other people act this way too. I used to hear about a woman who also had cfs who pulled herself up by her bootstraps and worked fulltime. I know this person said this to try to motivate me. That's her style ..

I've seen plenty of medical professionals who didn't get this either. I've been accused of exaggeratig

my symptoms, directly or through eye rolling, from people who REALLY should have a better grasp on my illness. Some of the doctors I've seen have encouraged me to date. There's some "normal"

parameter that they think I am capable of meeting. Huh ? Unless I want to be a hooker, lol, my

inability to sit or stand, makes my dating limitted.

Soooooo, why don't people understand that symptom severity is important. And why do so many

medical professionals not understand this ?

This really isn't just a rant, I'm confused by how some people, especially medically trained, can't grasp the reality of an unseen disability. Isn't this covered in med school ?

To make matters worse, my dd was only 2 years old when I got sick, so just imagine what she heard

Or Picked up on for all those years ...

Thanks for reading this and thanks for being here. I appreciate all the effort we make to support

each other here ... Tc .. D

[ramakentesh]

I guess with POTS you look normal despite feeling terrible so people dont understand that your not well at all.

[Lette]

I feel your pain, luckilly my family and my husbands are absolute ledgends and I couldnt cope without them especially my husband but sometimes with friends I do get the feeling that they are like, 'Oh ust get on with it' not realising that sometimes it takes every last ounce of energy just to sit up in bed never mind get out of it and work!!

[Lette]

*Husband, iI only have one!! LOL!!!

[ramakentesh]

For me my friends wanted to hear about it say for the first few months or so. Now tens years later they have no interest. I have one friend in my grouop who has a worse illness than mine so I think they are always like 'who cares, your not dying like our other friend.'

[Dizzysillyak]

Hi ram,

It's so nice to talk to people who get this .. Thanks ...

What a coincidence ..I just heard that line about others being worse off than me the other day.

It's like they think we need a pep talk .. Or maybe, it's just where "healthy" people go when they

don't know what to say ??? Or are they being judgemental ?

After being sick for 22 years I know I must sound like a broken record to my old freinds and family too.

When I became a health nut, gfcf diet +, back in 2005, and responded well to the diet, we all got excited about the possibility that I'd regain my health but it hasn't happened. And while I feel like I've made progress, those who

don't understand how complex this illness is, aren't impressed. From what they read, Celiacs are supposed

to heal simply by going gf .. Um, no .. So now, I'm getting eye rolling and negative comments over this now too.

Tc .. D

[rubytuesday]

Only family or friends who actually witness my syncope really get it--until then, they seem to 'try' to be understanding and supportive but seeing me faint, when never had seen before in my episode of relaying my day, weren't/aren't taken so seriously.

DS even took me to UTMC to see heart specialist--be there during exam, hear what he had to say, yet today, asked me if I wanted to help him out by caring for his dog (like co-own the pet he'd rescued). I had to explain to him today (after nearly passing out at vet's w/ him today when BP had run low all day and had couple near syncope earlier in day, too, and he grew up with my mirgraines--he hasn't actually seen me faint, although his son has as has my DH), so obviously he still doesn't quite get it. I told him that if I were able to reliably care for a pet, I would have a pet but since I cannot, I cannot assume daily care for his pet while he works. Too boot it would mean 'just tying dog out to do business' when freezing cold/windy when I can't tolerate heat or cold w/ dysautonomia and fibro/arthritis and only weigh around 90 lbs and have narcolepsy, and it takes all day some times to summons enough energy to do basic ADLs.

DH has been a Godsend to me but now really has to help out by doing all grocery shopping and p.m. meals and help get laundry from bottom of hamper and back of dryer. He's started helping w/ laundry and making bed since he'd first seen me faint this spring. (had sx's 2 1/2 years before true syncope).

Now DM (who's never seen me faint) and lives in another town wants to stay w/ me whenever DH travels for work thinking I shouldn't be left alone in case I would get hurt or not wake up from event. (I at least am able to pace myself and do or not do but if I had elderly DM to worry about driving in snow and ice to be here, and to feel need to make her feel comfortable, I'd probably be more stressed that would work against this body).

But I feel blessed that at least those closest to me take me seriously now. (DS fusses at me when I do things I shouldn't that brings me to floor and does try to help but it's my fault for trying to be miss independent when I'm able to be vertical). I spring on a 'good day' and hope things will continue to fare well for at least being able to do part of what I set out to do.

We should all be so blessed. I understand your frustration. It's been a long road for me--dx'd with the invisible fibro/looking so good in 1998.

[mwise]

I am sooo sorry people are sooo judgemental of what we have and just don't understand or should I say believe us. I have had people say to me that you are faking your illness cause you look sooo good. I cringe because they only see what they want to see. They don't see the number of times I drop to the floor in the morning and night, crawl to the bathroom, kitchen, etc...use my wheelchair and/or rollator walker, feel my head full/buzzing, heart racing and bounding out of my chest, stomach pain, constipation and/or diarrhea and just feel like I am dying. I just pray for them that they don't get this, but wish sometimes they wore my shoes to see what it is like to have Dysautonomia. Keep your chin up and know there are several on this forum that know, love and understand what you are going through.

[Dizzysillyak]

Hi lette,

It's ok with me if you have more than one hubby .. Lol...

Thanks for replying. That's great that your family gets it. I know my family loves me but they

just aren't getting this right now.

I think part of what confuses them tho is that I do my best to entertain myself in order to avoid getting

depressed. I go stir crazy and get depressed quickly if I don't get out .. And this gets veiwed as me

doing what I want to do as opposed to meeting my obligations, family or otherwise. Meanwhile,

I veiw getting out as an act of desperation.

Hmmm, I'm back to feeling judged ... Are they are only seeing what they want to see ? .. D

take care .. D

Edited November 23, 2011 by corina

[ramakentesh]

My sister thinks its all in mind. ive heard others in the family say that to me so I stopped talking about it with her. It helped for a while when the yellow wiggle got POTS/OI but sometimes I even say its migraines or ankylosing spondylitis because I can then prove that these things would really make me feel bad.

Often I see doctors and when i tell them I have POTS and Ankylosing spondylitis they always say they feel very sorry for me because of the pain of AS and how sad it is, etc. But AS is a walk in the park compared to POTS and when I say that they are always shocked. They just assume POTS makes you a little dizzy sometimes, not that it can disable you and reduce blood to your brain by over 44%.

[icesktr189]

Yup no one in my family understood until my mom came down with it a couple months ago.... now they do too bad she has to go through it too though to finally understand.

[maggie]

If people are not interested in hearing your story why don't you just let it go and ask them how their day is going? I'm just getting well enough after being mostly home bound for six years and frankly I'm sick of talking about pots, I want to talk about anything else other then my disorder. I love finding out how other people are coping with what ever is going on in their lives. You might find if you listen to their story first and show concern for their need, because whether well or ill we all have needs, maybe they will stop and listen to yours. Frankly listening to others reminds me there are worse things out there then what I am dealing with. I find it rewarding to just show compassion to others, it's a small deed, but at this point that's about all the help I can give others. It makes my day when I can make a person laugh and cheer them up. We all could use some cheer especially this time of year. So take a chance, step out of your box and discover your gift of compassion blossom.

Maggie

[Libby]

Dizzysillyak - that is so incredibly frustrating. The comparing of the symptoms thing is what gets me the most - like it's some sort of competition. I WISH they could win, if that meant we would be better of by comparison. And it's on their minds whenever they see you, so it's hard to get away from talking about it.

I don't really talk about POTS, off the forum. I just don't see a point. I do have a friend who has her own medical issues, so she gets it, and a few close ones who deserve an explanation for why I'm such a lazy bum . But otherwise...My mother is the worst. The only time she mentions it is when something's going on with her body. 'Brain fog. That sounds like what I have. Maybe I have your thing, too. What? No, I don't get dizzy when I stand up.' - last week she had palpitations. Then she wants to know about what my heart does when it freaks out.

I think it's just beyond their comprehension. That you can look so normal, but feel cruddy - they just can't reconcile the two ideas. If we feel as bad as we say we do, we'd obviously LOOK sick. Ha. But I think I'm glad that they can't understand, if understanding would require them to experience this (though I can afford to be generous, as my POTS isn't so debilitating - if my symptoms were worse, I'd probably be beyond p*ssed at their attitudes).

[Dizzysillyak]

Hi rubytuesday,

Love thar restaurant, btw. Your point about others who saw you faint makes a goid point.

Here again there's something physical that sticks in their brains so they can comprehend it.

My brother tells a story of father who wasn't having any luck getting his teenage son to turn his

music down. The father was advised to combine his words to his son with an emotionally significant

event. That night when the son was playing his music too loudly again, the father picked up a

baseball bat and destroyed the music player ...

So it looks like I need to come up with an emotionally significant event that they can remember .. Lol

Fwiw .. I only know of 3 people in my life who have ever picked up on my petite mals. Two were

teachers who were trained in watching people's faces to see if they understood what was being said. And

one was a doctor who sees other patients with these so he knows what to look for. Everyone else just gets annoyed like I am tuning them out on purpose. Duh ...

Thanks for your input .. Tc .. D

Ps. Why is it that people think we can take care of pets ? Been there done that too .. I guess they are only seeing the benefits of having a pet, not the actual work involved ..

[Dizzysillyak]

Hi mwise,

I'm sorry to hear that you're struggling with this illness and all the judgemental nonsense too. Hugs ..

Thanks for replying .. It does appear that they are only seeing what they want to see.

I'm not sure how much of that is human nature ... As in, our innate survival instincts. When I first

became ill and disabled a freind of mine told me that I was totally useless. It wasn't until he got sick

that he began to understand how it feels to be disabled.

Tc .. D

[Dizzysillyak]

Hi dani,

I'm sorry your mother has this too. I wonder how often dysautonomia happens in families ...

On the upside, they get it now .. Tc .. D

[Dizzysillyak]

Hi maggie,

I do listen to my family's and freinds stories and they know that .. We're close ..

At this point I need to explain why I'm mostly bedridden and can't be social. Obviously, my family

is struggling with comprehending this change ..

Tc .. D

[Dizzysillyak]

Hi libby,

Too funny .. I wish they could win sometimes too.. The one comparing symptoms with me is just being judgemental.

Oddly enough she has a medical background and should know better .. Instead of being more understanding

she uses this as a tool to put others down. You'd think she'd have seen how patients symptoms vary

in severity at some point .. How bizzare is that ?

Imho, educating people on how our bodies work would go a long way towards ending the predjudice.

You're right about not being as upset when our symptoms are manageable. I wasn't this sensitive before

I was stuck in a supine position for a few weeks. My attitude was much better ... I actually started

eating chocolate again to try to improve my mood... Lol

Tc .. D

[sue1234]

This is a big issue with my POTS. My husband totally supports me, my kids(grown) totally understand, but the rest of my family "pretend" that nothing is wrong with me. I've had this for 6 years and NOT ONCE have my parents asked me how I'm feeling or if anything is better. We have short, small talk visits where we don't talk about my life-altering health. Because socializing makes my POTS absolutely unbearable, it is rare for me to do anything. Holidays are the worst, with little kids being loud and so many people, that I've gotten to where my husband and kids just eat here with me. Then, after eating, they go drink coffee/dessert with extended family. Just because I can't socialize doesn't mean they can't, so I really encouraged them to visit the family afterwards.

I have no clue what my non-immediate family thinks, but I don't think it is good. My siblings don't call, and we only see each other once or twice a year. I am by nature a glass half-full kind of person in almost all respects of life, but family issues leaves me empty. Pre-POTS, I was the one in the family to put on elaborate holiday meals, get sisters together for shopping trips, etc. Since I went down with POTS, one sister just doesn't take the time, ever, to contact me or has never asked what is wrong with me. The other sister has asked, but doesn't have any time to actually call me except for my birthday. She lives 30 minutes away!

This is the one part of my life that makes me bitter, which is so opposite of the kind of person I really am. It's like I spent my healthy life spending time and energy with my family, but they can't do the same when I actually need it. I feel like crying writing this, and I am NOT a cryer. This is very hard on me to grasp a family that ignores my life. I've said before that if this was one of my sisters, I would arrange a weekly meal for them or even just ask "what can I do?".

I don't talk about doctors' appts. I haven't even told(and won't) my parents about the high VIP labs and the need for a PET scan to look for a tumor. I've gotten to the point that if they can't support my ill health without a tumor declaration, I still don't want their "concern". Oh yea, I've become bitter! I can't help it anymore.

But, on a good note, I am okay with my sit-at-home-not-able-to-drive life. I hope for a "cure", but I'm not depressed over my life. I am finding new outlets for my mental energy and I do socialize on FB with friends, so that helps me feel connected to the outside world.

[corina]

i'm really touched by all of your stories, thank you all for sharing them. knowing that your not alone always helps. this is why i love this forum so much: it's here for all of us and we all are here for eachother, to listen and reach out. sending all of you who struggle warm wishes and hope that some day people (and especially our loved ones) will understand and care.

[maggie]

I'm so glad you are close to your family. I guess it's hard for any of us who have these issues to understand and it would be that much harder for someone who doesn't have these issues to understand at all. I hope in time they will come to understand what you are going through and will lend a helping hand. All of us need a helping hand and this forum shows the world we are doing the best we can with what we have been delt. On this eve of Thanksgiving it is my prayer that all human beings be kind to one another on just one day of the year.

Maggie

[sue1234]

I would also like to say I so appreciate all of you here! I don't ever vent, except to my poor husband.

It's nice to have others that understand POTS is not due to:

-anxiety

-depression

-hypochondria

-"just" irritable bowel

-unconditioned

-oops, almost forgot, small heart

-and more ridiculous labels

Again, thanks everyone for listening on this forum!! And, thanks for this thread to help purge feelings every now and then!

[Dizzysillyak]

Hi sue,

Sorry to hear you're going thru this with your family too. Hugs .. Hopefully someday those family

members outside your immediate circle will learn to be more supportive.

Maybe we can get Dr. Oz to do a segment on this ? He could explain how we really can not stand up at times and

how the severity level determines functionality. I'd love to see one if his bizarre demos on this,

wouldn't you ?

Btw .. I "think" part of my problem was low sodium again... Duh .. I've been loading up on salt and feeling

a little better. I made it out today and didn't feel horrible .. I salt all my foods but it seems I need to suck

down an extra 1 - 2000 mg somedays. I feel pickled ..

Take care .. D

[Frugalmama]

I struggle with this, too, as I'm sure we all do. I honestly think part of it, though, is not from malice but just lack of comprehension. The folks on this forum know what it is like to feel this way day in and day out, to have every facet of your life changed by something that no other human can see....but for the "normal" person, they can't even imagine the impact this illness has. I think that's why so many of us really struggle with getting approved for disability - how can you make a healthy adjudicator realize that you're always on the cusp of passing out (or constantly fainting), not to mention the dozens of other serious symptoms that plague us daily. If you stand back (pardon the pun!), it really does sound ridiculous, doesn't it?

I am very grateful to have a very good support system. My DH is awesome, and although my kids are all under five, they are as compassionate and understanding as they can be at their ages. My parents live close and give us all the help they can, even though my mom is also disabled. My mostly-healthy sister has a hard time understanding, but I think she really does try even though she doesn't understand the depths of my disability.

A dear pastor friend of mine has an illness that no one can even name - he has lived with excruciating pain, random paralysis, and a host of other symptoms for 30+ years that they best doctors in the world are stumped by. I remember him telling me that I had to just deal with the fact that other people weren't going to understand - because they simply can't. The blessing of these strange illnesses is the compassion it gives us for those that suffer, and we are so blessed to live in a time where we can find support in places such as this forum. It's so great to find a place where I'm "normal!"

[Dizzysillyak]

Hi corina,

Thanks for being a moderator here. This board is a safer place because of people like you. Hugs ..

I love this forum for those reasons too but also for all the great medical info we share.

I hope that this sharing will allow us to solve this puzzle or at least give the medical profession more to look at.

I keep running into other illnesses with similiar symptoms.. The more we know and share, the closer we'll get

to a solution... : )

Take care.. D