scared of re-examination for disability benefits
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March 17, 2007 at 10:40 am
[FONT=Times New Roman][SIZE=3]I was about to send you some pictures of my short vacation to one of the most beautiful parts of my country. It was such a wonderful trip and I enjoyed it so much, but suddenly I have been thrown back on earth so I don’t feel like posting photos at this moment.[/SIZE][/FONT]
[FONT=Times New Roman][SIZE=2][SIZE=3]This morning I received a letter which I have dreaded for a long time. For some time now re-examinations of disabled and sick people concerning disability benefits have been taking place in the Netherlands[/SIZE][SIZE=3], because we cost too much money, basically. The government has set up very strict rules, which even some of the doctors who have to perform the examinations have protested against, and there are many examples of people who really can’t work, but are forced to look for a job anyway (and keep applying to exhaustion and in vain for jobs). What it boils down to is that if you can lift up an arm you are fit for doing a deskjob, even if you can’t sit behind a desk for more than half an hour.[/SIZE][/SIZE][/FONT]
[FONT=Times New Roman][SIZE=2][FONT="][FONT=Times New Roman][SIZE=3]I am so afraid of the examination. I have had very bad experiences with physical examinations: they hurt and usually they do not reveil much about my condition. What do these medical examiners know about GBS anyway? As far as I know they are not supposed to look into these things, they just have to follow the regular procedure of the examination. I am always tired, I am in pain, I do not have a lot of stamina, but I can lift up my arm… I am so scared of the outcome and I really don’t know what to do. At this point I am inclined to tell lies about what I can and what I can’t do, but that might not be a good idea.
I know from all I have read on this forum this must sound all to familiar to a lot of you, so can you help me? Is there something I can do to make them see I can’t work?[/SIZE][/FONT]
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March 17, 2007 at 2:24 pm
Dear Eva,
I feel i need to say something to you, although I dont really know how to comfort you or what advice to give, I just wish I could do something 🙁 . From all the conversations we have had, I know that you, of all people, wishes that they could be out there working and following your dreams. I feel that sometimes, when we go through the same testing and questioning, having to explain everything to prove or disprove our disabilities over and over again, it sort of ‘diminishes’ us in a way. I’m sure many of us suffer [FONT=Times New Roman][SIZE=3][FONT=Verdana][SIZE=2]psychological problems such as anxiety and depression because we find it hard not to be able to do certain things, we build ourselves up as best we can, only to feel somehow guilty, abnormal or whatever word is used, when we have to go through the process of having to explain and/or justify our ‘shortcomings’ all over again.[/SIZE][/FONT][/SIZE][/FONT]
Do these doctors doing the examinations have any history or information about your medical history at all? When do you go for your examination?
I’m sorry you had to come home after such a wonderful trip to such depressing news.
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March 17, 2007 at 11:44 pm
Eva,
Alison said it so well, that I haven’t much to add, except that perhaps you can print out any descriptive medical articles about GBS, to support your case, and give them to the examining doctor before your exam (preferably a few days before you see the doctor, so he/she has plenty of time review and absorb the information. Since GBS is rare, most doctors aren’t really familiar with it – educate them. You might even highlight the parts of the articles that pertain to your own symptoms.
Be your own advocate – go on the offensive, instead of waiting for them to put you on the defensive.
Being someone who tends to “over-prepare” for things such as this re-evaluation, I would probably even make a comprehensive (and non-emotional) list of the various disabling residual medical problems you face. Make it plain, to anyone with common sense who reviews your case, why you can’t work.
Unless the examining doctor is a total jerk, they will want to help you. Make it easy for them, by providing the argument for them in favor of continuing your disability. This is actually a tactic used by Donald Trump – he makes it easy for people to say “yes” to his deals, by doing the homework for them.
Can’t guarantee that this will do the trick, but can only say that this general approach has worked for me many times, and in many different situations. I hope it helps you too.
Best wishes,
Suzanne
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March 18, 2007 at 12:40 am
Eva,
Would it help for you to present the examiner with letters from past treating physicians attesting to your inability to maintain a sustained level of performance that would be expected of you from an employer? (Sort of an official affidavit – mabe something about your need for continuing medical care, lack of improvement or continuing decline, ) I don’t know anything about the system in your country, but I know a little something about you from your posts. Both my daughter and I have enjoyed reading many of your posts and feel we benefited from your kindness and humor as much as the person you had posted to. I hope the examiner is able to see that person behind the paperwork.
cd
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March 18, 2007 at 5:54 am
Dear Alison, Suzanne and cd,
Thank you for your kind replies and your advise. You made me cry, but it was a good cry and I needed it.
Yes, I have provided as much information about my GBS-history and -residuals as I could in the past, including a list of all my symptoms just like you suggested Suzanne, but I have experienced many times that this information was put aside or not even looked at in the first place. As if it made them even more suspicious. One medical examiner had an enormous pile of papers right in front of her and still managed to ask how I thought my RSI affected my abilities to work… It depends on the person you have in front of you.
These experiences have left me feeling helpless at times, but the fact that you stress that I should continue to stand up for myself and not feel like there is no point in doing so makes me feel stronger. I will take all your advise at heart and bring all documentation I can. Beware doctors, here I come…I will have to call tomorrow morning though to reschedule the appointment, because they want me to come at 8 o’ clock in the morning on the 30th of march and it is more than a half an hours drive. Considering it takes at least an hour for me to get dressed I think I will definitely not be able to be my own best advocate. Although it would be a way to show them what a wreck I can be…:) I’ll let you know how it goes.
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March 18, 2007 at 7:45 am
Dear Eva,
[quote]
but I have experienced many times that this information was put aside or not even looked at in the first place. As if it made them even more suspicious.
[/quote]Ooooh yes! This brings back memories for me! That is how I have been treated by my doctors in the past. I even asked one to please put the information I brought into my file, and he said to me that it would be better if I took it home again. He then asked me what my husband thought about me spending so much time on the internet 😡 .
I dont think I would have said this before this week but ……. (and I know its not the same, I just wanted to tell you that there may be hope) ….. I finally tracked down a doctor I had a few years ago, before these residuals really started up with vengance again. (He is young, and really seemed to want to know things etc). I took a deep breath and called his new offices on Thursday, and thankfully, they had an opening on Friday. As I put the phone down, I started shaking and all of a sudden crying :confused: , why on earth did I react like that? The rest of the day I was so pathetic, scared and nervous. I reacted like this because I didnt know how HE would react to me …… I was scared he would dismiss me as if it was all in my head. I was scared to print things out in case his reaction would be the same as my doctor before …… and I just [I]couldnt [/I]go through that again! I called my parents and I finally calmed down. SORRY about the long story! I took one article from the internet and a book from the Foundation called ‘[I]An Overview for the Layperson'[/I] , but was still hesitant to give it to him. Long story short :rolleyes: He listened to me! He was interested and said that his patients teach him sooo much, he told me so many things (cant possibly go into more detail) and I left feeling like a weight had been lifted and faith restored a little.
EVA, the only reason I’m telling you this is that my prayer is that you experience something like this when you go to be evaluated. I was almost ready to give up and not go and see anyone. I am hoping that you get someone who is willing to be ‘enlightened’ and that all your stress and angst just drains away …. that is my prayer for you! And I WILL be praying for you everyday until you tell us the outcome. -
March 18, 2007 at 3:53 pm
Alison, that is amazing! I am so happy for you, because I know you have been as lonely with this as I am. And don’t worry about the crying and feeling vulnerable. I know about these kind of surprise attacks from your body after making mature and sensible decisions like calling for a doctors appointment you really do not want to make. They can make you feel stupid, but you have been through a lot and sometimes you can’t possibly control these emotions and you just need to release the pressure.
Your story gives me courage, but even more so do your prayers. Even if I get a “total jerk” (learning to use new words and expressions in English from you guys everyday:D), your prayers will help.
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March 18, 2007 at 4:54 pm
Eva, [COLOR=darkred]BELIEVE!!!![/COLOR][COLOR=navy] now repeat after me…I know I can get through this, I know I’ll keep my Disability status. You can do it, Eva! with all of your Family behind you, you can do anything!:) you’re in my thoughts and prayers Eva. Big Hugs![/COLOR]
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March 18, 2007 at 4:58 pm
Eva,
They say that when going on an interview, the interviewer makes his/her mind up within the first few minutes. So….maybe you should keep this in mind when you go for your appointment. Are you having somoene drive you? You should have someone take you into the office. Going in alone seems to project that you are well enough to be independent. Perhaps staying up all night and not sleeping will show you at your worst. No make-up, don’t wash your hair,wear a non flattering color, miss buttoning a few buttons…..show him what you feel like! I do not thnik this is dishonest..in your case. It is just that no one can know what we go through. -
March 19, 2007 at 5:36 am
[COLOR=navy]I Know I Can Get Through This, I Know I’ll Keep My Disability Status!! I BELIEVE!!!
Thanks Cheryl, that really helps! And thank you Carolyn. My father said to me yesterday: ‘what do you mean you can lift your arm?! You cannot lift up your arm, because it hurts when you do it, and if it won’t hurt when you do it, it will afterwards. You will not lift up your arm!!’
My dad is great, and so are you:)!
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March 19, 2007 at 10:54 am
He listened to me! He was interested and said that his patients teach him sooo much, he told me so many things (cant possibly go into more detail) and I left feeling like a weight had been lifted and faith restored a little.
Glad to hear this Ali.
Eva,
Have FAITH it will help. I thought there was going to be a battle in my case, but they called and confirmed mine last week. Find a doctor that gives a $*&% and it will be ok. Mine wrote a letter to the SSA and he gave me a copy. It stated just enough to give them the information they needed. I will be praying for you.
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March 20, 2007 at 2:19 pm
Thanks Tim! I will keep you all posted:).
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March 21, 2007 at 9:48 pm
I was always told to describe my WORST day-and look bad, too. Yep. One interviewer said how you dress-even hair/makeup/jewelry can make the decision.I had a friend wear a brightly colored outfit and it was commented on repeatedly how well she looked.She could barely walk”’
I strongly suggest you have a friend drive you AND go into the exam room with you as your advocate. That’s how alot do here in the USA and you’d be surprised how that extra 3 rd pair of ears make the doctors act nicer.Your dad sounds like he might be the one to take with you.
When I go to my regular doctors looking crummy they are surprised as I’m a “smiler”. When I don’t they realize how bad I feel. I don’t know how much I conceal my illness till I go in with my cane, shaking and sweating-then the nurses are running with ginger ale and wet wash clothes to help me.
The best of luck. May it all go well. -
March 24, 2007 at 7:16 am
I managed to postpone the appointment. I have to be there an hour later, at nine o’clock next Friday.
Limekat, I will have to bring someone with me anyway because I am not able to travel on my own, and I will make my entrance in a wheelchair. Just in case this won’t do the trick I will make sure I look my worst!
I know what you mean about the smiling. When I was little I often had to wait for a very long time in the waiting room in hospital. When finally the doctor opened the door it seemed a very long trip from the waiting room to his desk and I couldn’t help smiling, just from feeling very nervous! Later on in life I used to smile because I didn’t want the doctor to think I was weak or depressed. In both cases they were impressed how well I was doing…I guess smiling is not always a beautiful thing. :D, oops sorry, :(.
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March 25, 2007 at 12:54 am
The “smilers”-so many people see my big grin and naturally assume I’m just fine even if I’m hobbling painfully.I push myself-I do too much but there’s no one else to do it.
Today a nieghbor asked me to help her unload a huge bag of gardening soil-here I am having infusions for CIDP. Yes, I helped her.
CIDP/GBS can be very invisible illnesses-who can tell when we are walking/acting okay.I look okay-I always try to be that way when leaving the house.
I do hope you do well at the interview. You’re not playing a game going in a wheelchair. You’re doing what you need to do. Wear dark clothes, no jewelry/makeup/nail polish/dressy shoes. Plain hair style and be as serious as possible.Have that extra friend accompany you into the exam room with pen and paper ready to keep notes and also to tell problems you have they have witnessed.
When I have gone to any of my doctors I am surprised at how they practically run out of the room if I start to cry or shake/sweat. So different from when I go looking nice with that big SMILE.
Since we both have cats (see your sweet feline picture)-cats naturally hide any sign of weakness/illness because if they were out in the wild they would quickly be considered easy prey. Maybe thats’ why we smile-to show we’re okay when we’re not….Just an observation-strictly “feline”. -
March 26, 2007 at 6:29 pm
I know how you feel. I am on disability also and to look at me you wouldn’t think anything was wrong with me. I am tired all the time and hurting. I can’t even do my housework because my arms and legs freeze up and don’t want to work. I can lift my arm up too. I had Miller-Fisher about 20 years ago.
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March 27, 2007 at 1:56 pm
Thanks for this information. It really makes sense what animals do. I am going to dress accordingly for my new neurologist appt. next Monday. Disability would be nice, but I think I would fall into the category of mostly can work. And really, all I want from the doctor is to acknowledge this (fatigue, pain, etc.) is a residual and it is real.
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March 30, 2007 at 7:28 am
It is a few hours since the interview this morning and although I am exhausted I wanted to tell you all it went well. I felt you standing behind me, so to speak, even though most of you must have been sound asleep.
When I stepped into his office the doctor asked me happily if I was making any progress with my dissertation. First I thought ‘here we go again’ but I was very focused and said to him I obviously had some explaining to do about the past five years and my long and complex medical history before that. I just told my story, nothing more, nothing less, and all the strategies I came up with before the interview suddenly seemed so absurd. Why did I ever think the truth wasn’t ‘impressive’ enough? I felt mentally strong and confident enough to tell things just the way they are, without making jokes or toning things down.
After a few sentences the doctor became quiet and serious. I could tell he had to follow protocol and was embarrassed to ask me questions like ‘what are your ideas on starting work again?’ just after I told him about the painful and long road before I accepted that doing the job that I loved wasn’t possible anymore, because for me even leafing through a book is too much most of the time. I almost felt sorry for him to have to do this job, I really did.
At the end he wanted me to squeeze his fingers, but I couldn’t. At that point it was more than obvious a full medical examination was out of the question. I handed him all the things I had printed out and a list of my medical history and residuals. He accepted them thankfully and although he probably wasn’t allowed to say anything about the outcome of his examination, he said he didn’t need more proof of my disability and I shouldn’t expect to be called up for further examination anymore.
I am sorry for not being overly excited and happy about the outcome of the interview at this moment. Writing this is helpful but painful and I am too tired to be thrilled. First I will need to go back to bed again and recover. I will feel relieved later on and I will celebrate my ‘victory’, I promise.
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March 30, 2007 at 8:11 am
Eva,
What a strong testament of the power of truth. I am glad is going the it a way that can be very helpful to you. Take care and be well.
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March 30, 2007 at 9:05 am
Eva, that sounds very encouraging. please take enough time to destress and revive yourself, you deserve it. Big Hugs!:)
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March 30, 2007 at 6:48 pm
Eva,
I was so relieved about the outcome of your re-evaluation, that I found myself giving a big sigh of relief when I read your post.
My heart also aches for you because I know how draining it is to have to “relive” the GBS experience, in order to explain to someone how things are for you. I also know that although you are glad of the outcome, and glad the exam is over, it hurts to have to admit to yourself (and others) just how debilitated you actually are. I guess a lot of us live in a combination of a state of semi-denial and hope, just to be able to function without being depressed about our losses all of the time.
At least you got the outcome you were hoping for, and now they will leave you alone about it. Get plenty of rest and then do something fun to celebrate. You are very brave. 🙂
Suzanne
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March 30, 2007 at 7:00 pm
Dear Eva,
Isnt it wonderful when things just work out? I am so thrilled for you, and so glad you got someone who understood. I hope you spend the weekend relaxing and unwinding. I am thinking about you.
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April 2, 2007 at 12:54 am
Eva,
So glad it turned out well. Looking directly at the interviewer with a serious expression can be very sobering. No smiling, no joking and firm direct conversation.I have found this can be so powerful-it gets the doctors attention.
Please rest up and know you deserve your disability.I too get so worked up over what turned out to be quite simple.
I miss reading-I gave over 600 books to charity. I am no longer able to because I’m so tired. -
April 2, 2007 at 6:29 am
Thank you again everyone for your warm support, your ‘feline’ truths and for sharing things we have in common.
Suzanne, you are so right about the mixed feelings I had after the interview. I was in a way relieved and I did feel proud of myself, but having to prove (for the umpteenth time…) I really cannot work because I am chronically debilitated is still hard in many ways.
At first the doctor did put me to the test by asking questions like: ‘So, you just sit there all day long? That’s all you ever do?’ Those were tactics, I know, and I reacted to them in a ‘professional’ way (keeping Donald Trump in mind…), but after I wrote on the forum to let you all know how the examination went I collapsed and for a few days I really could do nothing more than just ‘sit there all day long’ and this sentence kept popping up in my mind.
But yesterday was a beautifully sunny day and although I still couldn’t do much more than ‘sit there all day’, I was sitting in the sun, enjoying spring and feeling very happy. And at this moment, yes, I am still sitting, but I am also writing again.
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