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People Comparing Their Illnesses To Pots


yogini
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Do any of you have people in your lives who call you whenever they have a cold or another everyday bug and go on and on about how sick and horrible they feel? I noticed I have a couple friends and family members who started doing this after I got POTS. When I was first sick and my mom was staying with me, my sister used to come over all the time and lie on the couch and say how sick and tired she felt - coincidentally these complaints stopped once my mom left. A couple of other friends also do this to me on a regular basis - one once compared my POTS to her husband having his wisdom teeth removed. I am really not one to complain, either, so it's not like I mention my POTS unless I am really ill or when I can't do something due to POTS.

I'm not saying that other people don't have the right to be miserable when they have health issues. I just hate that they aren't sensitive to the fact that I am dealing with a chronic condition and try to compare their situation with mine. It really hurts and upsets me. Do any of you deal with this too? Any advice?

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I think part of this phenomenon might be an attempt to understand - or try to make us think they understand what we are going through. I know I'm reaching here! But I do think this is at least a very small part of the thought process.

On the other hand, it is frustrating. I don't think people have ANY idea of how fatigued POTSy people are.

Debilitating fatigue that makes your head spin and you pass out . . . I have just given up on trying to make people understand this illness. However, I have a great secretary who always makes a point of telling church members when I am having a flare up and am home in bed or having to take a break. It helps them to know it is an on-going issue for me.

It is hard to quantify fatigue so I don't know how to convince people our fatigue is different than being tired in a transitory manner. Ours doesn't really go away. I've been feeling really perky and energetic this morning. I've gotten a lot accomplished. However, I am aware that I have to slow down or I will REALLY be crashing tonight or tomorrow.

Hang in there!

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Sometimes I just wonder if some people just want to minimize what we deal with, and it's their way of saying I don't believe you have a real illness--------------------"see look at me, I have a real illness, and look what tired REALLY is."

Because our illness is silent, and we don't have signs they can physically see, then it must not exist.

Keep in mind, that some people who act like this may be attention seekers, ignorant, or just plain mean. Some people actually get jealous----especially family members. They feel jealous of any attention that may be taken away from them due to someone else who may need it more.

I have a sister in law who finds a way to tell me she doesn't believe me by saying everything else she can think of----other then come right out and say "she can't believe me". i.e.---> She'll say, "wow, how can you go to the grocery store with your husband, if your so sick?"-------------That's kind of generic, but you get what I mean...... B) When I told her I filed for SSDI, She went on and on about how SHE WORKS, and she has FIBROMYALGIA----- B) She would have some similar comment in almost every conversation we had. It got worse if I was really crashing badly on a particular day----then she would rub it in more, perhaps because she thought I was faking, and trying to get attention.

Some people are so ignorant that even if you show them literature about your illness, they will say it's some kind unsubstantiated information that was found on the internet. It can't mean anything--------or the docotors listed in the reference line must be nuts themselves.

Maxine :0)

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Oh man this totally drives me nuts!!!!!

I had someone very recently tell me that I dont know what its like to work and be tired everyday.. I was like WHAT!!! I had to set this person straight...

I told him that I did at one time work..(and i DID have pots at the time only i ddint know.. i had fatigue but it was nothing like it now)..... and i remember how i would feel at the end of the night clicking out....what i would give to feel "THAT" kind of tired again.....and that the fatigue that i have daily NOW is profound... and that it feels like ive done stenous exercise for hours at a time while having a case of the flu... that is what my "feeling "tired" feels like"

I dont mean to down play what another person feels like b/c one can not truly know how on another feels.. but yet at the same time i hate it when somebody belittle or downplays/minimizes how im really feeling as well.. and would honestly like some respect at least..

had to jump in on this topic... b/c ppl doing this irritates the you know what out of me!

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It very much depends on the circumstances whether I find it annoying or not. I've often found that, once you start discussing health issues with somebody, they're going to feel more comfortable sharing with you in turn. This is particularly true if, like us, you're more familiar than the average bear with the medical community and coping strategies!

Also, I think there is, as dari said, an impulse there to connect and understand/reassure both parties in the conversation. This is particularly true with family members, who sometimes can't really admit to themselves how bad you may feel because it would upset them too much. Remember, denial is not just a river in egypt! B)

And, hey, to give people the benefit of the doubt- maybe they've really got some sort of chronic condition they want to share!

But, yeah, sadly, sometimes people either don't believe you or get jealous of the 'attention' you get. If I'm being smart, I try to just separate myself from them. When I'm not smart (or I can't separate myself), I'll normally end up throwing a few snide comments in there. What I should probably do is act all gracious and use it as a teaching opportunity ("why, yes, I work very hard to carve out time to spend with my husband. You may notice that I'm drinking gatorade- the sodium in it raises my blood pressure so that I don't have an episode of syncope). Maybe that'll be my resolution for next year...

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I think you guys are right. It does depend on the circumstances and the person. I think sometimes people are trying to compete for attention, other times they forget I am sick or are trying (though not succeeding) to be helpful or show that they understand how I feel. It's just like the "You look good" comments that we all get from time to time. Some people do it to be mean and others have good intentions but say the wrong thing. It's still frustrating b/c I've tried to explain my situation...and I think I sometimes make it worse by not responding or pretending to agree with their comparisons.

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AWE Dizz, you have your new avatar on there! SOOOOO CUTE!!!!!!

Dizz I know you worked so hard that in your young life you actually accumulated enough work credits to qualify for SSDI!

So that shows how hard your worked.

I worked about 22 years, mostly full time----at least the last 14 years or so of it. I couldn't imagine having all my issues and working----- B)

I just sat down after putting together some scalloped potatos. I wanted to make some for my Son, his fiance, and their daughter Kaela. She be trick-or-treating in my neighborhood tonight--- :) She's going to be a princess---so cute....

I'm wiped out from doing the potatos----------- B)

We'll get pictures--- :P

Maxine :0)

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I have thought about this and agree, with everything posted. But I had a situation. It is the planning of my mothers funeral. She has not passed away yet but is expected to soon.

Well I had to lay it all out because I cannot stand at a receiving line. I was very clear what I can do what I can't - why. And plenty of links. I had to tell them not to panic if "something happens" because para sympathic and sympathic nervous system both enter play. And I should expect to be emotional. I have absolutely no doubt that some people do not care because they are self absorbed. Some people are preoccupied but sweet at heart And some people listen well enough, because they listen, in general, because they respect other people in general, and because they care about other people in general- to get it.

I have done likewise here. Not taking the time to read posts. Because when I finish a reply I will usually reread what I'm replying to and I see the poster already mentioned something I ask about. So than I "fix" my reply.

I went out with a long time friend , I ordered an ice tea- put 4 sugars in it, to which she said- that's why your fatigued.

My reply?

"Oh, sugar causes arrhythmias- huh - and did it cause your brothers stroke also." Now ,she knows also, that I'm seeing a therapist because my Dr. says I'm depressed.

But she doesn't eat sugar - so it must be that! Many people think that "theirs" is the right way- its called intellectual blindness to the other side of the story.

And it gets old.

:)

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Yeah, it can be annoying! I think a lot of the time though it is from a lack of understanding of the other person, or they are trying and just don't know what to say etc. But, sometimes people just seem to think that one nights bad sleep equals how we feel, although we all know that's not how we would describe it!

:)

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Tell me about it :angry:

We have a friend who will either come round or call me and ask if ...........say , a headache she has could be the start of POTS because she looks unwell , when I ask her 'when did it start ' I once got a wonderful reply of ' this morning, I woke up having drunk a whole bottle of red wine last night as I was up to 2 am celebrating '..................... :o is she thick or something ?????

But its not just a headache , its a limb ache, neck pain , blurred vision ( try taking your head out of the loo once and a while ) she has even started to call and ask us if her 8 year old daughter has it now , because Mike my son has been tested , so yep..........she's also asked who she should contact for testing of them both :blink:

We have tried to talk to her on this , but she's adamant its a case of if Mike and I have it then so must her daughter and she ............as we live so near . :blink: .......slightly crazy mother on her way folks :(

Oh , yes I have told her 'its not catching ' :) but its almost as if she is wishing she had it and checks and rechecks herself and her child almost each day ................worried , you bet , but not for POTS , more likely signs of that condition called ' something??????- syndrome by proxy ' where mothers or fathers do things to themselves or there children so that they are in the limelight all the time .

I won't have her over here now , its a shame I know , but all she does , even when I'm feeling fair to middling is go on and on about my drugs ( what kind , amounts ) how I feel , how I do things ...............STOP IT ..........neither Mike, Mark or I want this 24/7 its just not wanted , I dont know about you all , but then I'm feeling a bit on the good side I dont need someone talking about POTS back at me all the time ............nope, I want to put on a glorious bead encrusted gown and waltz around the Ritz hotels ballroom with a tall dark stranger ..............well in my dreams .

Love Ami.

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I think that very, very few people, if any understand the fatigue that I experience due to POTS. I have found something to say that seems to work better than saying that I am tired. I say that it is more than fatigue. It is exhaustion.

When I was 18 years old, I broke my pelvis in two places. POTS is a million times harder than that! In my training I used to work for 36 hours straight with no sleep and toxic, high stress of running to codes, walking around all day to round in one or more hospital, etc. The fatigue that I now feel from POTS is worse than what I felt doing all that before the POTS hit me hard! Before POTS, I would have thought that the pre POTS experiences were just so grueling.

My point is that people just have no idea due to no comparison point in their charmed personal lives. They don't know how good they have it, because they have never had anything so bad. I know I had it so very good before the POTS, but I did not know how good until after the POTS. We take so much for granted. Now, I know that it could be worse even now, and try to be grateful for what I can do. It is all a matter of perspective.

If someone complains of feeling tired, we could say, "Now multiple your normal fatigue by 100 and imagine that it will not go away for years, if ever!"

Karyn

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Guest tearose

Not only is it hurtful when someone tries to minimize our symptoms and illness, it is terrible especially when I am weak, that it makes me question whether or not I should even talk to other people. Who wants to share with others if you are going to be left feeling worse afterwards.

I have tried to keep close only those friends who know me. I am working at ignoring the idiots.

tearose

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I hate that. Whenever i talk to people about something they always bring up there little problems, like how "o yea yesteday i got a flu shot, and i can still feel where the injection was, and it hurts so i cant even concentrate" im like seriously!!!!!! omg!

In band i sit next to the biggest brat in the school and she complains about everything. As much as it i just look at it as an opportunity for me to become more patient. I also have to remind myself that god knows how well i handle this and how tough i really am, i shouldnt seek praise from those around me for how tough i am, when really god is the only one in life i want to please, and so he knows, and that is all that matters. But some days its really hard to remember that one...

Hang in there everyone, we know were tough, and if no one else can believe that its their own problem, i guess its just another thing we will have to get used to! ;)

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Be especially careful if you know medical terminology, as people will really think your nuts. After having read the research to understand what is happening to my body, and having to advocate for myself with many medical professionals you just learn the medical terminologies used with dysautonomia, EDS, and spine disorders.

When speaking to family, or friends I try to speak in terms they understand, but even then it's still like trying to talk to a box of rocks. If you speak to a doctor and casually discuss your medical concerns, and are fairly well versed in medical terminology, then they either look at you like they are put off by it, or they think you spend your days and nights inventing illnesses from the internet. Some doctors actually respect you, and just calmly discuss our concerns with us, and offer actual medical treatments, or solutions.

I took medical terminology classes in 2003 for medical coding, but none of the medical terminology I have spoken to my Docs with is anything I learned in my classes, or very little. A very small amount on the ANS was covered---maybe 1 or two pages, verses 60 pages on obstetrics and gynecology, and 100 years ago Grandma Walton delivered babies. I'm not putting down medical advances that have saved babies lives, or the lives of the mother, I'm just a bit miffed that the complex ANS doesn't have more coverage in medical school. I know my classes were the very basics for medical coding, but I have talked to medical students, and VERY LITTLE is covered on the ANS. I learned everything on my own from either one of the support web sites, or reading many medical articles, journals, or research text from the handful of Docs that dare go into the complex world of the ANS.

You would think that some folks would respect you more for trying to help yourself.

We live in a shallow, and sometimes, a primitive thinking society. Some people, or Docs can't see past their little box.

It makes my skin crawl seeing the consequences of this.

Maxine :0)

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YES! And it drives me nuts! Last Christmas, I went to my dad's parents for Christmas Lunch and while we were eating everyone was complaining about having a cold. I just sat there thinking, "what about me? I'm sick, and I'll probably be sick my entire life!" It made me so mad!! No one that day really asked me how I was doing healthwise.

A few weeks after that I emailed my grandmother and told her how upset I was about this. She replied that she didn't even notice it because she was busy running back and forth to the kitchen but that she was sorry they upset me.

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  • 3 weeks later...

It seems like the worst thing that many people deal with physically is a bad cold. Then they complain about the side effects from the cold medication. I don't even take cold medication because I fear that the cold meds would interact with all the meds that I take. The stuffy nose, runny nose, cough, etc are NOTHING to me (just a minor inconvenience) compared to the worsening of my POTS and migraines when I get any simple cold. Then people complain about being sick with stomach flu for two whole days! What a joke when I suffer with it for weeks when my POTS flairs because I get dehydrated and my pills don't get absorbed correctly.

Thank God for DanActive, the new drinkable yogurt with probiotics. It does seem to have strengthened my immune system. Knock on wood. I have not had a viral infection in several months.

Karyn

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I don't even mention that I have POTS to most people. (Of course, my family members know.) My friends notice that I'm hospitalized often. I simply talk about the specific malady that lands me there, like dehydration, rather than the POTS. POTS is my "normal." I, and my son, need more rest than most, and have to pace ourselves. I work hard to set those boundaries and don't look for sympathy, nor do I do I feel that I owe anyone an explanation.

Everyone deals with something. Unfortunately, we basically live with an invisible illness that can be very debilitating. I work as much and as hard as I can. When my body says "STOP," I do. I don't have a choice.

Have you ever heard about the spoon analogy? It's the story of 2 college roomates, having a bite at a diner. (I may get the details wong, but I'll try to get the gist of it right!) One of the girls lives with chronic fatigue syndrome. Her roommate, for the first time, asked the CFS gal what it was like living with CFS. She replied by gathering 12 spoons up from surrounding tables. She said, "These spoons represent my energy level. Throughout the day, I have to make very careful choices about what I can do and what I can't. For instance, taking a shower might cost me 4 spoons, leaving me only 8 for the rest of the day. Attending a class may be 5 spoons. Even bending over to put on my shoes may cost me a couple of spoons. Going out with you tonight cost me a few more spoons. When I run out, I have to lie down. My day is over." This visual illustration was eye opening for the roommate, who suddenly had a new respect for her friend.

I wish we all had such understanding friends and family around us! In the meantime, don't compare yourself to anyone else. Consider sharing details of your illness only with those who really care. Conserve your spoons and spend them wisely!

Julie

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Hi..

I tried to read all the repyies, but not abel to..sorry to u all for that.

I love the spoonteori, i tryed it out whit and with out any luck.. its hard to open up and not be belived. but its nice when u do and u see that the other person suddenly realise that this is a bitt more complicated then ust fainting and bein a bitt tierd..

I try to be understanding when people go overbord on complaining on the flue etc,.. we all need to do that.. but when people compear a week ore two to years and years I get a litle confuesed.. People cant really be that ignorant.. Ore saying how they envie me so can sit all day doing nothing.. That hurts.. I try to be the bigger person..

but it is not always that easy..

have a nice weekend every one

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My mother has very little tolerance, patience, and understanding when it comes to the limitations that POTS places upon my life. My mother suffers from hydrocephalous (excess fluid on the brain) which results in daily migraine headaches. Also, about 2 years ago when the surgeons were removing her lumbar shunt from her back they caused nerve damage in her leg resulting in RSD. She has to use a walker to get around and she is on a 100mg transdermal Fentanyl patch to control her pain. In spite of her disabilities, my mom is still able to perform household chores such as laundry, washing dishes, taking out the trash, climbing up and down the stairs 20+ a day, etc. She feels that I am fully capable of being just as active as her and that I am simply choosing to be lazy and weak. My mother is unable to drive due to the fact that she is on such heavy duty pain medication and she becomes absolutely irate when I am too ill from POTS to drive her where she wants to go and perform her errands when she wants them done.

I am currently suffering from a C.diff. infection and I have had blood diarrhea for the past 3 weeks in addition to fever/chills, 30 pound weight loss over the course of 5 days, and out of control POTS symptoms. Sitting down my BP is 160/93 and my pulse is 130 and standing up my BP is 70/40 and my pulse is 180. In spite of all of my current disabling symptoms, my mother still demanded that I drive her to CVS so that she could pick up a prescription. When I told her that I was too unstable to perform this task, yet another argument ensued. She accused me of being completely obsessed with my illness and selfish. She actually had the audacity to say such condescending/mean spirited things as: you are not the first person to run a fever and that in comparison to her ailments I am really not that bad off. She feels that I am choosing to be weak and that she does not have that luxury. I cannot believe that she is still clinging to the false belief that my illness is nothing compared to hers even after I was hospitalized in the critical care unit for 7 days in a row due to the severe dehydration resulting from a combination of POTS and the bloody stools associated with C.diff. It is so hard to live with someone who exhibits such a profound lack of support and compassion with respect to the challenges I struggle with on a daily basis due to the disabling effects of POTS.

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