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How Important To You That Others Believe How Sick You Feel

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Just wondering, because ive discovered that quite frankly most people dont really care how youre feeling. Theyre busy with their life, and in our culture nobody likes a complainer. Besides this, many of us look quite healthy. In my case, ive gained weight because i just cant go out for those 90 minute walks or 2 hour tennis matches that kept my weight regulated.

To add insult to injury, people only really see us when we're at our best. When we're barely functionaly obviously we dont go anywhere socially. So they think we're basically like that all the time.

Finally, if a loved one has ever been to an ER room with you and the doctor said "you have anxiety, go home, here are some pills" then they tend to believe them. After all, theyre DOCTORS right?

I remember the look on my wifes face after 1.5 years of searching for diagnosis. I had severe palpitations for the first time---palpitations, at least the banging in the chest kind, are not my worst symptom. She stood there looking at the EKG monitor when my BP went skyrocketing up and then plumeting down, and she could hear the beep beep bonk bonk bonk of the PVC's. It was the first time I think she had absolute assurance that I wasnt suffering some kind of ongoing panic attack.

I've learned to keep my mouth shut more or less. If someone asks i say i have a neurological disorder that causes extrreme fatigue and arrythmia. They can comprehend that.

I do feel strange as a man who used to be strong, that i cant pick up anything over 25 pounds, such as a tire, and carry it to the shed without major problems. Ive learned to move about slowly and methodically and to NEVER suddenly spike my blood pressure from a normal rate. That makes me sick for about 24 hours. Thankfully im one that Klonapin really helps. But I admit I hate being on a med just to feel normal. There is no "buzz" on it, it just makes me feel semi-normal for awhile.

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I can so relate. Even people that you think understand, surprise you some times. I don't think people really "GET IT", unless they have it. I don't try to explain, it's not even "Possible" for them to understand or comprehend what we all go through.

Issie

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I totally know what you mean. With the anxiety thing, and people not understanding how bad you truly feel... One awesome thing I have noticed latley though is that it feels like people ARE starting care how I feel. They may not get it, and they may say things that make me roll my eyes (on the inside :)) but I have been getting emails and Facebook messages from people asking me stuff like the results of my tests or whatever. And the teachers I got this year have so much sympathy and are trying to help me instead of acting like I'm some defiant teenager who won't go to school. I don't know what changed really because it was definetly not like this last year. I think POTS might be getting more awareness because a lot more people I talk to have heard of it! Sorry got kind of off topic. :)

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I can completely relate. I do have a lot of supportive and sympathetic friends, but I am so tired of feeling like I'm resented at work. I had one person (the woman who replaced me when I finally quit my regular three days per week) ask "so what's it like being a lady of leisure?" I wasn't sure if I wanted to cry or punch her! If I had an illness that people were familiar with, I wouldn't have to feel like I need to justify barely working, or explain that when I'm not working, I'm really not having a whole lot of fun!!

However, I am so lucky in that my husband completely believes me. I think it's b/c he sees how much I want to do things - work, see friends, be physically active - and how utterly wrecked I am when I do those things.

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I'm with all of you. Only my mom and stepdad get it cause I live with them and they've seen the really bad episodes. But I've gotten to the point that I don't care what others believe anymore. I do have two really good friends that also seem to get it and the keep me smiling.

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It's a tough situation, I've spent a lot of years feeling like the only people who believe me are my parents. I've noticed there is a difference in the way people react to POTS when I was a teenager than they do now in my 20s.

As a teenager people my age were rough, I looked normal but I had gone to a small school & everyone knew I was "that girl who got really sick" and two things happened they were either

-afraid of me and always shocked to find out I watch the same movies & listen to the same music OR

- the thought I was making it up for attention and talked behind my back.

Getting into my 20s I've come across some more understanding people on the surface. I don't however think they grasp what its like. They may be more accepting but they have their own lives, why have a relationship with me?

That's what I struggle with- everyone moves on & I'm just left by myself. It hurts, I have to fight the "I'm unlikeable" thoughts.

People do only see us at our "best" and can't grasp that we go home and crash, sometimes for days.

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It has always amazed me when family members, who I thought would understand my daughter's issues with POTS, don't seem to get it. I had to have surgery last year and was unable to continue mowing the lawn. My brother said that maybe I could get my daughter, who has POTS, to mow the lawn. She has extreme heat intolerance and had not been able to go to school for two years. And he thought she would be able to mow the lawn in 90-95 degree weather? That's when I realized that some people will never get it.

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I think it really is a case of until it happens to you people do not understand. What shocks me is again, people who are close to me and who i think understand will say something like, oh i am so sorry your not well you sounded so good yesterday. Firstly yesterday was yesterday, i may have been 10% better than today and thats why i sounded good, but really i wasnt doing well then and today i am worse!!! Does that make sense lol!!

I think what people dont understand with POTs is it isnt like something like say Diverticulitus. I mean absolute no disrespect to these sufferers here, i am simply giving my opinion on how i see the comparision between the 2. Diverticulitis from what i understand you can have awful, awful flare ups and then go into remission for a while and function pretty well (this is inly based on my friend that i know) POTs you can be ready to get in the car and go shopping, get to the car, and in that space of time you feel like you are into 3 days of a serious flu virus. I hate the way i can not plan a single thing because i can feel like death in literally hours! I think thats what people cant understand and the reasons why this can happen to us.

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And also spinner

I could be wrong here, but i would guess that maybe you would get even less sympathy being male? I dont know. Maybe Dr's dont see you as a winging female when you go to appoitments so you have an advantage there, but i would say the rest of the general public would think being male you should cope more. Am i right or wrong in your case?

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Guest maia

Oh i so get it. the most infuriating bit is having to keep changing doctors because office notes before the diagnosis-and even along with it- say anxiety, so whenever a doctor sees that they have an automatic out instead of trying to find the actual medical problem. its infuriating, degrating, humiliating, and it hurts.

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Definitely, a guy is supposed to suck it up, not complain, and get out there and make money. If you go through a period where you cant people whisper behind your back, i know this for a fact because it happened to me. There have been people who flat out think i was faking this. Which is odd, because I've traveled to both mayo and cleve clinic at expense and alone and i can assure you it was about as much fun as dodging sharks.

Some weeks this past summer i just could not mow the lawn certain days. I would do it in shifts. It made me feel ridiculous because ive been strong my whole life. But within a minute or two, y'all know whether you can do something or not.

And dont get me started on people "inviting" you places. You at first say yes, but after you back out occasionally they get resentful and angry. How dare you interrupt their fun? You learn to tell people "i wont know until that morning" which makes them angrier. Fortunately my pastor believes me and has never doubted me, and the science does not lie. The only way to even attempt to make people understand is to say i feel like ive been injected with toxic waste and am breathing through a straw right now. Ive actually handed someone a straw before and challenged them to breathe through it for two minutes. They didnt last 20 seconds.

And also spinner

I could be wrong here, but i would guess that maybe you would get even less sympathy being male? I dont know. Maybe Dr's dont see you as a winging female when you go to appoitments so you have an advantage there, but i would say the rest of the general public would think being male you should cope more. Am i right or wrong in your case?

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HA HA!! Good for you!!! I personally describe POTS as having sludge instead of blood running through your veins!! But i like your version better, i will use that!!!

:P

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Yes, I feel like that is one of the hardest parts of having a chronic illness. Most people don't "get it". People tell me I look great on the rare occasions that I am out and about. And people are constantly asking my husband if I am feeling better yet. All this feels like it is diminishing the daily struggle I go through. It's like it's too much for most people to deal with the fact that I am doing so poorly.

I feel very lucky to have a supportive family. But even they don't totally get it. I wish there were more support groups out there. It would be nice to connect with more people who have the same experience.

Every day is a struggle and most people can't comprehend what that is like. I think they feel like you must just get used to it. I guess I have maybe gotten used to how hard my life is, but it still really hard every day. It's hard not to have a never-ending pitty party :)

Thank goodness for all of you out there on DINET! It's nice to know that some people out there understand!

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I hate to say it but for me I just want to yell "I TOLD YOU SO" because I've gone 15+ years with this disorder and no diagnosis so my family would think I was faking it and my coaches would think I was faking it because I'd pass out during conditioning. Once my heart rate gets up so high if I don't stop and let it slow down I collapse. My family has become a little more understanding as they learn more about the disorder. For us to say "I'm really tired today" really means you are just physically and mentally wiped out!! There are times that I really do not want to stand up because I don't want to have to have one of my "dizzy spells". People just don't understand that and I don't think they really can. It's like trying to explain to someone who doesn't have kids what life is like with a newborn, you just can't comprehend it until you have to live it.

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I cant believe people think you would fake this? Why? Are you still friends with these people??????

I must admit there are so many times when you have to bite your tongue, especially when someone says "Im so tired i could drop after all that driving, i just cant do anything tonight" you feel like screaming at them that you wished you could drive miles, and if you could you would still have the energy to party through the evening because all it takes for others to recover from a heavy day is a good nights sleep and their bodies recover! How lucky they are.

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i have had this illness for 15+years(started going to doctors 15 years ago to figure out what was wrong with me). back then people really didnt understand, they thought anxiety at first, then dozens of other diagnosis. family members and friends said that i could just wish it away or work though it with a positive attitude. now after years being diagnosised with ncs/pots and the pacemaker reports of how it affects my heart people understand but easily forget. i have been trying really hard not to complain. i know people get tired of hearing about it, even if they ask. i can hear relief in their voice if i just say im ok. just a few days of not talking about symptoms and all of a sudden they think im better. They start making request of things, they know i cant really do. or say oh! i thought u were just having a lazy day the other day, when really i couldnt stand up or get out of bed. double edge sword, to express symptoms or keep them to myself. it is the same with people who im around a lot and i think they really understand. if i felt better 1 hour ago, they dont understand why i cant get up and fix myself something to eat or get a drink now. they dont know how i feel could change so quick. other people dont understand because they only see me on my best days. i think i need to change my vocabulary to explain myself better. instead of im tired i should say physically exhausted (unable to even lift my arms) i have the problem of trying to minimize my symptoms or problems. instead of dizzy today, i should explain i cant get out of bed. i dont think anyone without this problem can really understand ,but it hurts the most when people you are close to say things or dont understand. if they cant understand, how can anyone understand.

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I can really relate to what you are saying. So many people I don't think really get it, even the people that you'd think would understand more.

Through figuring out the diseases I have (Mitochondrial Disease, POTS...) and being diagnosed, there have been some(feels like a lot though) doctors that haven't understood what I go through and have passed it off as "head" stuff. Consequently, when any doctors ask questions I feel like they are trying to show that I shouldn't feel the way I feel, even though I am chronically ill. Like when I say I have chest pain, the response from a doctor might be "when", or " what triggers it". To me, I feel like those questions are to get certain responses out of me that they are trying to correlate as to being in my head, even when they are trying to help.

I'm on IV fluids 24/7. A doctor took me off for one day while in a hospital to do tests and compare those with results from being on fluids. Before he even did the testing, he had a picture painted of me; and when he did almost all the tests off fluids and everything looked ok(though I had significant low blood volume...but I think that result came back later), he was assuming I was fine. However, the toughest test was still yet to come. A cardiac output test which involves a tilt table. Since I was pretty wiped from all the tests earlier and had blood drawn, I knew I was going to pass out-I was already light headed and having other POTS symptoms. My Mom noticing this, didn't want me to do it. However, I wanted to show them I did have something wrong. So I did the test, passed out, and had my BP taken: something like 72/38, after one minute of trying to get the machine to cooperate.

Doing the test and passing out was very difficult. There was a period in my life before fluids when passing out was all I did. So doing it reminded me of the place when I just didn't know when something was going to happen, and just in general felt scared. I'm not too sure if deciding to do the test in the end and there by proving what goes on w/o iv fluids for me was worth it, but yet, the doctors seemed to get it more. Man, I just don't know what to make of things sometimes, but what I know, is that there is a lot of ignorance out there. What's good for me though, is at the end of the day, the people I live with, I love; and love me. My family's great; I am wicked fortunate for them and their support!

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Oh yes, you are all speaking my language!!!!

I feel able to cope most of the time with the opinions (or lack of interest) of others in general. I feel like I have certainly become stronger. But I so wish they could all come and reside behind my eyes for a few minutes and then remember that feeling.

The most difficult part for me is that my lovely husband, who has been through so much with me and who is so supportive... sometimes seems to be in the 'doubter' camp. He strenuously denies it and tells me off for 'putting words into his mouth' for something he doesn't feel. It's just that when I have to ask again for something, or remind again about something, or if my answer to the "How are you feeling?" doesn't fit with his plan for the morning/afternoon/weekend/lifetime I catch a look of such intense frustration in him. Of course he hates this. We all do. When I see that look in him, my insides fight with the injustice of it, with my jealousy that he gets to feel pissed about it and yet still go be a normal person... and with my own inability to quantify how I am feeling without editing the whole of it on the way out. I wish wish wish that he didn't have to deal with my health issues. I know I am fortunate to even have him in my life. I often apologise and he says "it's not your fault"... but I feel like I should be sorry, make amends somehow/someway. He tells me that I'm worth it, but will he always be confident about that? We never dreamed that the 'sickness and health' vow would come to be so significant for us.

Do any of you guys feel this way about your husband/ wife/ partner/ significant other?

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It's not really important to me other than my husband. You can tell someone exactly how you feel but they won't understand until they have to feel it.

Rachel, I do feel that way also. I was sick before we got married and I always wondered why he sticks around and deals with it. Why wouldn't he pick someone who is 'normal' and can do 'normal' things every day instead of just once a week, if that. My husband can get frustrated also. A big thing for me is motion making my symptoms worse so I rarely leave the house. He does the grocery shopping and errands which I know he hates. It can be difficult to deal with from the other side but we're still able to love and be loved.

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I was thinking about this. As far as my family and friends, they've actually been very good in this respect. However, I think it's because I really do look bad. My eyes look kind of sunken into my head with huge black circles, I've lost quite a bit of weight, and my color is so pale. I think this is also why doctors have been so determined to find out why I am having this - I really do look pretty bad which is sometimes a bit odd to hear from people because who wants to be told they look like crap??

Only thing that I have noticed is that as soon as I got medication that allowed me to have a few hours of semi-normal, there seemed to be this assumption that I could just get back to my 'normal' self. For me, it's meant that I can actually sit upright, stand, walk around the house, etc but I haven't reached a real normal yet. Just allowed me to have a few hours of relief from my symptoms.

I'm lucky that my husband is so very patient but I haven't had this nearly as long as some of you. I wonder what it will do to my relationships with friends and family if it continues on. This worries me and motivates me to find a cause, a cure, or something - anything really.

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I think it really is a case of until it happens to you people do not understand. What shocks me is again, people who are close to me and who i think understand will say something like, oh i am so sorry your not well you sounded so good yesterday. Firstly yesterday was yesterday, i may have been 10% better than today and thats why i sounded good, but really i wasnt doing well then and today i am worse!!! Does that make sense lol!!

I think what people dont understand with POTs is it isnt like something like say Diverticulitus. I mean absolute no disrespect to these sufferers here, i am simply giving my opinion on how i see the comparision between the 2. Diverticulitis from what i understand you can have awful, awful flare ups and then go into remission for a while and function pretty well (this is inly based on my friend that i know) POTs you can be ready to get in the car and go shopping, get to the car, and in that space of time you feel like you are into 3 days of a serious flu virus. I hate the way i can not plan a single thing because i can feel like death in literally hours! I think thats what people cant understand and the reasons why this can happen to us.

Diamond, you said it perfectly! I am so frustrated with not being able to plan ANYTHING. I had that exact thing happen where I ws about to get into the car to go to the health food store, thought I'd better have a sandwich first, then got an attack of weakness, anxiety and fake flu that I was down and out for over 6 hours!

So for hose of you who have been dealing with this for a while, do the doctors just tell you that's how it's going to be? I'm still looking for solutions but sometimes I think it's not going to do me any good because things are getting worse instead of better.

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I have been sick for many years (at least 13, since I started to get sick after my first daughter was born) and along the way have picked up diagnoses of asthma, allergies, celiac, fibromyalgia and now POTS. All along the way I have been doubted by my husband. He tells me it is all just me "freaking out", his way of saying I am having a panic attack since we all know that panic attacks are cured through antihistamines, asthma inhalers, and a gluten free diet, lol. The couple of times I have actually fainted due to POTS, he just tells me to knock it off and get up off the floor. Last night, after fighting dizziness and brain zaps all day, I was particularly exhausted and couldn't go on another minute and had to lie down. This was after a full day at work, taking my daughter to ballet, going to the library, taking the kids out for ice cream, cooking dinner and helping my daughter make an easter hat for school. I put the kids to bed and told him I was exhausted and had to lie down immediately and he said "or just lazy". I am positive he will never get it. I wish there was a way to bestow our symptoms on others for exactly one day to show them what it is like.

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It is very important to be believed but unfortunately I don't think I am...It use to hurt really bad to see my family members just look at me with disregard to my complaints like "yeah right your feeling so bad again"...I think they assume its mental so I have distanced myself from even talking too much about how I feel. I really hate being accused of choosing the time when I feel the worse like during events or when I have something important to take care of, then I magically have energy for things I enjoy. Like I use being sick as a advantage...

To be honest I'm pretty lonely with the true feelings of this illness, I go to a counselor and get alot of "oh that symptom can be anxiety" but I know the difference since I deal with both, so I spend alot of time explaining medical stuff, which I don't really feel like doing.

I guess the importance of others understanding is beginning to not even matter because I'm tired of proving something I don't even want to have.

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Pink 1975 I am so sorry to hear that your husband is treating you that way. This illness is so awful and someone talking to you that way is unacceptable. I cant image a love one telling me to knock it off and get up off the floor after I fainted. You should be proud of all you accomplish in a day. Right now, I could never have completed all those tasks. Many people with out an illness are not motivated enough to do all those activities. I have lost many friends due to this illness. Many people just do not understand and never will. After awhile, I have decided that I don't want to be around the negativity. It would be so hard to be in a relationship with someone like that, someone you have to be around every day. It just breaks my heart that you are treated that way. I don't know how to correct your problem. However, would he be receptive to the suggestion of couple counseling or therapy. Also, does he ever go to doctor appointments with you? In my experience (15+ years of Pots) the more knowledge people have about this illness or any illness, the more understanding they are. I hope your husband begins to understand or at least learns to appreciate what you do for your family. I hope you have a family member or friend in your life that is supportive of you. My prayers and best wishes go out to you.

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Pink 1975 I am so sorry to hear that your husband is treating you that way. This illness is so awful and someone talking to you that way is unacceptable. I cant image a love one telling me to knock it off and get up off the floor after I fainted. You should be proud of all you accomplish in a day. Right now, I could never have completed all those tasks. Many people with out an illness are not motivated enough to do all those activities. I have lost many friends due to this illness. Many people just do not understand and never will. After awhile, I have decided that I don't want to be around the negativity. It would be so hard to be in a relationship with someone like that, someone you have to be around every day. It just breaks my heart that you are treated that way. I don't know how to correct your problem. However, would he be receptive to the suggestion of couple counseling or therapy. Also, does he ever go to doctor appointments with you? In my experience (15+ years of Pots) the more knowledge people have about this illness or any illness, the more understanding they are. I hope your husband begins to understand or at least learns to appreciate what you do for your family. I hope you have a family member or friend in your life that is supportive of you. My prayers and best wishes go out to you.

Yep, he's a big butt when it comes to understanding any of this. He went with me for the tilt table test but didn't go in the room. I failed it in sixty seconds so that should have been a clue for him, but he was just happy that we got to go home earlier than they told us. He is hanging on to the original anxiety diagnosis that I got years ago. So, his reason for my failed test was that I just "freaked out". I agree with you that many people, not just our spouses have no clue what POTS is like. Maybe someone should invent a POTS simulator that we could make people try to show what it is like.

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