How do you handle family judging you about SSDI ?

[Guest Julia59]

I just got done talking to my sister in law on the phone. Apparently my brother feels that if he can work in his condition---then I should be able to work. My brother does have health problems, but on the same hand he also does not take care of himself. I think his last scare might change that however. He was pretty sick with pancreatitis----that is some pretty ugly stuff. Anyway he came though it OK---but has to change his style of living and a very, very low fat diet. He also has a number of problems with his shoulder, and back---and unfortunately has a fairly physical demanding job.

However, he does not have anything close to the issues we suffer from on a daily basis. I can tell you right now I would get wiped out just getting ready for work. I have worked for a long time---about 25 years----some physically demanding----some in an office setting for the last 10 years. When a friend of mine came to town 2 years ago---I visited her everyday in the hospital for 2 hours twice a day---total of 4 hours. I crashed pretty bad by the end of the week----and that is what helped me to determine if I should file for SSDI---as this was somewhat like what a part time job would be.

I'm not a sedentary type of person-----even on bad days I will try to do something----anything. I get judged for that------if I can go help my parents out for a couple of hours with dinner, or some light housework then I must be OK to work............. I'm one that will push until I can't push anymore. I like to help other people because it makes me feel useful---plus it comes in handy for the person being helped.

Well I only do this if I am able........ A job does not allow us to decide when we are able-----you have to be there every day----on THEIR schedule----not ours----that's just not the way things work. If I help someone out-----they know I may need to leave or lay down.....and at times I could crash for weeks and be fairly house bound.

One gift I have is sometimes knowing what a person is thinking mainly from watching their body language----and careful listening. My brother doesn't understand any of this----and until he does, he shouldn't judge. There is a lot more to POTS then body aches----and it's no picnic. Just watching TV can be so over stimulating it could send some of us to the pits of the pots hole. We all know what a malfunctioning autonomic nervous system can do-------it controls all out involuntary body functions.

So if my brother would like to see what it's like to wake up out of a dead sleep with his heart race at 150 BPM, blood pressure of 70/50, then try to stand up only to get dizzy or pass out-----then deal with all the other fun stuff like digestive problems/or the digestive system just not working at all, bladder dysfunction, body aches---and profound fatigue-------then he may have a different opinion on what is disabling!

And that's not the half of it as many of us have POTS along with other illnesses----and crippling spine problems due to EDS----or as something separate alltogether. Then let's not forget the horrible migraines----I often forget that symptom because it's not a major problem for me----so I could only imagine what that must be like when added to the rest of the mix.

I hope the next time my brother sees me he will know the batttle that goes on inside my body everyday----on how much I struggle just to take care of my own home----and personal needs. WE are warriors to a degree---as we not only have to battle the daily struggles of dysautonomia and other coexisting diseases, but we also have to deal with the continuous ignorance in the medical society, and the judgement of family and other ignorant people.

I have met a lot of people with various degrees of dysautonomia----and most of them are not able to handle gainful employment. Some are blessed with understanding bosses and are able to continue working, but it takes every fiber of thier being to find the strength.

I am proud of my brother for how hard he works and how good he takes care of his family----but he has no idea on what I go through on a daily basis. I pray for him---and his health all the time. He has to have a colonoscopy----and endoscopy to look at some thickening on the wall of his colon. I pray he is OK----and would never want to see him suffer. I only wish him the best health possible----and his family as I love them dearly.

It's difficult to continue caring for people who judge you------but I still try as I don't want to be the same way.

It's a hard cold world out there-----and we are in no shape to fight it-------so I just try to look the other way, but it isn't easy.....................

Julie :0)

[Jacquie802]

Hi, I am in the same boat as you. It's hard for others to understand what they don't have, it really is. Have you already applied for disability or are you just thinking about it?? I recently lost my job because I kept missing work from not feeling well. Also, I am only able to work for 3 or 4 hours at a time, and that's if I am having a good day. I have tried to work and just sitting up for extended periods of time make me faint, pallor, sweats, tachy, etc. I know everyone knows the symptoms, etc. I didn't know migraines were caused by POTS too. I have been just recently getting severe migraines, but I'm sure the added stress of bills, etc. doesn't help....The best advice I can give to you is if you haven't applied for SSDI and think you are going to need it then do it now...It is a very long and irritating process and from what I have read most ppl have to appeal the decision to get approved....Good luck and keep updating..

[taylortotmom]

Julie- Your post is so well written- have you considered printing it off for your brother to read? The way I best describe what we go through is to compare it to MS. We may look great but feel terrible. Our symptoms wax and wane. It was a battle for a long time until those close to me began seeing firsthand what really happens when things go wrong with me. I don't know if my father will ever truly understand. Although, after my husband, kids, and I lived with him for almost a year he could see exactly what I meant. Having my cardiologist on my side helped tremendously. The letter he wrote for my disability case more than anything showed my family that my symptoms were legitimate, not going away, and gainful employment is not possible- period. I find that the family can be the hardest to deal with at times. On one hand my mother calls every day to make sure I'm not dead (seriously) and then my father keeps talking about how this is proabably not going to last forever. Like, my iv treatments will no longer be necessary at one point and I will be able to just pick right back up where I left off five years ago. So, I have the extremes. My mother-in-law was extremely non-supportive for years and thought I was being lazy and trying to get out of working. She has since come around (again after seeing firsthand what truly goes on AND having the diagnoses she and my father and law can research on the internet). So..... I get what you are saying and unfortunately it took me "losing" my bp on the tilt for everyone to say- "oh, my- you are sick!". Hang in there- you know what goes on in your body. I really don't think anyone wants to be disabled and for other people to make that presumption is just ignorant.

Carmen

[Poohbear]

Julie,

Sorry you are going through this. I know how frustrating it is when friends and family don't understand. I would just be honest with him...tell him you feel he is judging you and that you love him but feel he has no clue to what you go through. Tell him that while you do have some good hours some days that you don't have the stamina or ability to work enough hours with the consistency needed to avoid being fired.

What about sharing the poem that Melissa and I wrote with him? I've had SO many people tell me how helpful that was for them because they began to understand just how "body-wide" our symptoms are.

Hang in there! I hope tomorrow is better for you and you don't have to deal with any more judging family members!!

[dizzygirl]

Oh boy Julie...

dealing with family is hard.... I know for me personally i often feel like I am trying to beat my heada gainst a brick wall... just in trying to defend myself in regards to my pots...

I unfortunalty have not found a way to get through to idiotic family memebrs.. .. so I ultimatley stopped giving an explainiation to things...

I feel that I have tried many many times to set the record straight w/ family as well asl freinds and medical providers.. and people are just ignorant Julie.. .. even the ones you love....

I have offered medical info to read.. asked "family" and "freinds" to acompany me to procedures and guru's in the potsy world...

there sometmes comes a point where you can only say and do so much.. and then you need to let that person alone.. as it gets to take so much more of precious energy to "explain" and "defend" yourself and your illness (s)..

I know that it has to hurt to hear things like you hear from people you would think that will be there for you.. as you would be there for them if they were in your shoe's....

there is no way to ease that kind of emotional pain.. You know how debilitating POts and your spinal issues are for you... just remerb that... and that you do have support through you Hubby... and you have us here on the forum.. we get it!!

I Know that you are not a lazy person Julie.. please dont let your family make you feel that way... you were a great help to me last week while I was in town.. and I am greatful for that!!

hang in there Julie....Its great that you still try and help your family and do for others. considering things... that alone makes you a better person.. a bigger person so to speak.. and lightyears ahead of the "ignorant people of the world"" who are truly blessed to be touched by a person kindness...when they dont realy deserve it...

HUGS to ya Julie

Linda

Edited December 2, 2005 by dizzygirl

[MightyMouse]

Julie, all the thoughts of others are out of your realm of control. Just do what you need to do for yourself, and let the rest go, if you can. I know it's hard.

For the longest tiime, I would get so rattled by my mother and my sisiters' comments insinuating that my health issues were created by me to get attention--now, years later, they finally realize I really have health problems. I had to stop fretting about it as it took too much of my energy.

My dad is not anywhere near understanding yet, but his wife is starting to "get it" because I actually have many symptoms like my dad's post-cardiac surgery issues that she lives with now daily. He can't stand for long periods, he can't tolerate heat, is not allowed to go in a hot tub, etc. She actually asked me, for the first time, how I was going to deal with the cold during our walk/run this weekend. It was the first time in the more than 20 years of being obviously ill that she's expressed interest. For the first 10 years, I would be so ticked off with the both of them, but again, I had to make my choice of where to focus my energy.

I just am myself during social occasions, and if they get confrontational, I would usually make one closing statement like "we're not going to agree on this so lets stop here" and I'd walk away. In the previous years, I'd have gotten into heated discussions, or I'd say nothing and swallow how mad I was. Then I'd feel awful physically from the emotional stress. I'd avoid family gatherings. Now, I go when I can, and don't go when I'm not up for it.

I focus only on the things that are going to help me now: It's my relationship here at home, taking care of my health (doctor's visits, etc.), school, my friends (close by and here on the internet), the family I'm close to that are supportive.

Julie, it's not your issue. It's theirs.

Nina

[DSM3KIDZ]

Well I agree with what everyone posted and understand completely how you feel. But try not to let it get you emotionally stressed. It's their problem and people just can't understand unless they walked a mile in our shoes. It would take a real wake up call for some people in my family to understand or even take time out from their self centered world to try to understand. According to my brothers wife....I'm milking this for all I can.

Well the people that know me and really care don't judge me. They know I would never want this for my life and would do anything to change it.

So surround yourself around those that are positive. I couldn't even imagine going to a job everyday for 2 hours a day. I think I could do "sometimes hours" but I know that's not possible so I might be applying soon too. I haven't had a job for 7 yr (stay-at-home- mom) and I couldn't get one if I wanted. This illness is too up and down.

Well I wish you luck with dealing with your brother I hope things turn around with his understanding.

Lazy daughter-in-law...............NOT!!!!!!!!!!

Dayna

[persephone]

I tell people that this is like Parkinsons or MS- that although it's not known to be progressive, it's essentially about the brain sending the wrong signals to the rest of the body, or wonky wiring meaning that the right messages don't get through, which affects all our automatic responses- blood pressure, pulse, breathing etc.

My family were a bit hard in the beginning- they didn't undesrtand. But now that they do- they're much better. I find that it's making people understand.

A lot of people look at me and even on dayswhen I feel poo they tell me I look good, so must be well.

You need to get people to look beyond this, including your brother. Try talking to him agian?

[Guest Julia59]

Thanks so much everyone-----It really means a lot to have your support.-------

I remember when I first crashed---in the beginning----I was really Tachy-----shakey----and the adrenaline was full surge. Then I began to feel wiped out----it was months from that that I found my culprit---(POTS).

At that time I was working as an office manager---and I was also trying to keep accts. receivable stable as it was a terrible mess---mostly because of the changing economy---it just wasn't the same I left it three years before that. I was working 50 hour weeks---and I took my job terribly seriously---too seriously my boss often told me. I found out rather suddenly that I was out of a job while I was going through a lot of testing trying to figure out what was wrong. I had great job reviews in Dec. 2000---and April 2001---five months after a great review I was told I was being replaced as office mgr.----but I could stay in AR if I wanted----(of course for less then half the pay).

They had found very high lead levels in my urine---and the regional VP wanted me out of there----FAST. On a monday---(payroll day) I had just finished all my Monday duties---and leaned back in my chair---(proud of myself for finishing all my tasks---I was so sick, but still finished. This was April---I was off the whole month of March---bed ridden. I had just been back to work about three weeks. I was struggling to stay there for 8 hours a day---most of the time I could only handle 5 or 6 hours. As I was resting my head back a little bit the phone rang-----it was a woman asking about MY JOB----That is how I found out.

My GM cooperated and listed me as a lay off on the pink slip because I didn't want to take the AR job for less then half the pay---and all that stress. It's a good thing I left------------I was too sick to be there.

I could never imagine being back there---not in million years. We never did find out anything about the lead---weather is was a mistake---or it was in my system too long to trace it in my blood---as the blood test showed normal levels. the blood life after lead poisoning is about 35 days----then you'll find it in the urine----then it settles in the bones. Dr. Grubb at one point was going to try and find a doctor who specializes in chemical exposure testing----but it never worked out. Dr. Grubb is so busy-----so I never persued it with him. Some day..............

Julie :0)[

[shannon]

Everyone with POTS has probably dealt with this general ignorance. One piece of advice I have is not to internalize what's happening. I know there have been times when I've believed that I am lazy for being sick (crazy, right?! ). We have a right to take care of our bodies. I think sometimes, with chronic illnesses, it is easy to forget that. So don't ever feel guilty for slowing down and taking care of yourself!! You aren't being lazy....you're being smart!

[gwen]

I appreciate your posting so much. The wallpaper in my middle bath has been down for 5 months. don't have the energy to put it up,muchless get on a ladder. My mother in law keeps asking to come down and put it up. NOOO! It is terribly hard in a small town to be sick and people not gossip about you especially about being lazy. I used to out do Martha Stewart. This site is making a believer out of my husband. He is concerned about me, but I don't think he understood the depth of it all. Thank you!

[d4g7]

I completely understand.

My friends and family don't understand either - they tend to think that I am just lazy if I won't go out to dinner with them, or I go to bed at 6pm and wake up at 8am.

As far as they can see, if you're not vomiting, or having some form of 'evidence' they can see, then what can be wrong with you???

To be honest, I find it easier to tell them I have a heart condition (well, that's what the doctors thought for 8 years anyway), and they seem to leave me alone.

Although I have frequent visits to the ER, I never bother to tell anyone - it's gets too complicated to explain.

For me, this last month has been a killer - I didn't realise how sick I have been (as well as having other troubles). I keep a diary of everything as I am so forgetful these days, and write in it every day, and put in what symptoms I had been having, if I had fainted, or felt faint, if I had to see a doctor, or get a prescription. I actually didn't notice that I have been quite ill this past month - and seen my GP 5 times in a month! And fainted or came close to it many, many times. I've had a gastic problem and also the flu.

At the beginning of the month I had a terrible POTS 'case', and was bedriden for a week (my father came up from Melbourne to see me, and couldn't see what I was complaining about), he just couldn't comprehend why I was so lethargic (I gave him the dinet website address, and now he seems a bit more informed and understanding).

I also printed out some info from the dinet website about the condition for people close to me (or people that have some type of 'duty of care'), like my employer, who is thankfully very understanding, and the Pipe Major of my Pipe Band - so that we could work out a way for me to 'fall out' of a parade or performance situation if I felt faint - and that has worked out okay as well.

So, I guess what I am trying to say is, there is some great info on the dinet website, obviously your family would have your best interests at heart, so, maybe you could give them some extracts from the info on the site, just to show them what your day to day life really is like...

[Dawg Tired]

I have always been one to work 2 or even 3 jobs. I think that about the 3rd or 4th month my family had to pay my rent they realized something was VERY wrong. I have been extremely fortunate as far as family goes, it has been the rest of the world - and I can ignore them!

[Mrs. Glass]

I just read your post and my heart goes out to you. My family is very supportive, which is very helpful. They knew that something was terribly wrong with me, because I never got sick before, and I was always there to help anyone when they needed it. Now I can not even clean my own house. My problem is all of my friends are Christians, and they just cant understand why I cant go to church anymore. I have tried to explain to them that for one I can not sit there that long, and all of the lights, the loud music and noise, and the many different colognes just make me feel where I wish that I could just pass out and get over it. The one hardest thing for me to do was to apply for disability. Although my friends and family encouraged me to go ahead and apply, it just feels like to me that I have given up. I agree with one of the other posts, that you should print out your post and send it to your brother. It is so well written, and maybe he just doesnt understand exactly what you are going through. I hope for your sake that he comes around. Mrs. Glass

I just got done talking to my sister in law on the phone. Apparently my brother feels that if he can work in his condition---then I should be able to work. My brother does have health problems, but on the same hand he also does not take care of himself. I think his last scare might change that however. He was pretty sick with pancreatitis----that is some pretty ugly stuff. Anyway he came though it OK---but has to change his style of living and a very, very low fat diet. He also has a number of problems with his shoulder, and back---and unfortunately has a fairly physical demanding job.

However, he does not have anything close to the issues we suffer from on a daily basis. I can tell you right now I would get wiped out just getting ready for work. I have worked for a long time---about 25 years----some physically demanding----some in an office setting for the last 10 years. When a friend of mine came to town 2 years ago---I visited her everyday in the hospital for 2 hours twice a day---total of 4 hours. I crashed pretty bad by the end of the week----and that is what helped me to determine if I should file for SSDI---as this was somewhat like what a part time job would be.

I'm not a sedentary type of person-----even on bad days I will try to do something----anything. I get judged for that------if I can go help my parents out for a couple of hours with dinner, or some light housework then I must be OK to work............. I'm one that will push until I can't push anymore. I like to help other people because it makes me feel useful---plus it comes in handy for the person being helped.

Well I only do this if I am able........ A job does not allow us to decide when we are able-----you have to be there every day----on THEIR schedule----not ours----that's just not the way things work. If I help someone out-----they know I may need to leave or lay down.....and at times I could crash for weeks and be fairly house bound.

One gift I have is sometimes knowing what a person is thinking mainly from watching their body language----and careful listening. My brother doesn't understand any of this----and until he does, he shouldn't judge. There is a lot more to POTS then body aches----and it's no picnic. Just watching TV can be so over stimulating it could send some of us to the pits of the pots hole. We all know what a malfunctioning autonomic nervous system can do-------it controls all out involuntary body functions.

So if my brother would like to see what it's like to wake up out of a dead sleep with his heart race at 150 BPM, blood pressure of 70/50, then try to stand up only to get dizzy or pass out-----then deal with all the other fun stuff like digestive problems/or the digestive system just not working at all, bladder dysfunction, body aches---and profound fatigue-------then he may have a different opinion on what is disabling!

And that's not the half of it as many of us have POTS along with other illnesses----and crippling spine problems due to EDS----or as something separate alltogether. Then let's not forget the horrible migraines----I often forget that symptom because it's not a major problem for me----so I could only imagine what that must be like when added to the rest of the mix.

I hope the next time my brother sees me he will know the batttle that goes on inside my body everyday----on how much I struggle just to take care of my own home----and personal needs. WE are warriors to a degree---as we not only have to battle the daily struggles of dysautonomia and other coexisting diseases, but we also have to deal with the continuous ignorance in the medical society, and the judgement of family and other ignorant people.

I have met a lot of people with various degrees of dysautonomia----and most of them are not able to handle gainful employment. Some are blessed with understanding bosses and are able to continue working, but it takes every fiber of thier being to find the strength.

I am proud of my brother for how hard he works and how good he takes care of his family----but he has no idea on what I go through on a daily basis. I pray for him---and his health all the time. He has to have a colonoscopy----and endoscopy to look at some thickening on the wall of his colon. I pray he is OK----and would never want to see him suffer. I only wish him the best health possible----and his family as I love them dearly.

It's difficult to continue caring for people who judge you------but I still try as I don't want to be the same way.

It's a hard cold world out there-----and we are in no shape to fight it-------so I just try to look the other way, but it isn't easy.....................

Julie :0)

[Miriam Poorman-Knox]

]

Lost my whole post#*********************. Its ironic that both of you are dealing with health problems. One not so visable. If I were you I would start the SSDI process. When and if your brother needs he can also. As your post said, You are bothdoing the very best that you can do at this time. Miriam

[lthomas521]

If you work while you are sick, instead of taking disability, you will merely displace a healthy person from a job, because your working will not increase the number of available jobs. Society will not be better off with you working, unless we are at full employment, which we aren't. Society will be worse off if you insist on destroying your health by working when you aren't well enough to do so. That's why we have disability insurance to begin with. So take disability if you are entitled to it, and don't take any crap from anyone about it.