Dealing with people who blame the victim

    • Anonymous
      July 8, 2009 at 6:30 pm

      Today, I had a very discouraging incident. A religious person I thought was a friend was talking to me about my illness. The gist of it is that she told me that I need to “love, love, love” those who’ve wronged me (particularly the doctor & staff in my case), not to judge them (because after all, what do I know about their motives), not to notice their wrongs (because after all, they didn’t know I’d have a bad reaction), but to “look the other way” (or I’d be miserable about it), not to look for or expect justice (because Jesus didn’t), and not to see or say anything negative about the situation, (or I’ll be responsible for the trouble I’ll bring upon myself). She also told me that she is going to pray for me (because I’m in the wrong), and why should I expect anything from the doctors (because after all, what can they actually do to help me anyway?)

      It’s just another straw to break the back of the afflicted–revictimizing the victim.

      If my symptoms didn’t make me so sleepy, I’d be pretty angry right now…
      For I think I’ve reached the ‘depression’ stage of things in my own case.
      For the longest time, I thought I could just work my way through it all, and recover, but that hasn’t happened. Then I felt angry at the professional people who didn’t help me when I turned to them during these 20 months of suffering. Lately I’ve been feeling overwhelmed and weak, and too dull and tired to think. I’ve had so many losses, and I’m steadily losing ground.
      Some of the townspeople here will actually laugh at me as they see me going by pushing my walker, and my feet are scraping loudly on the ground. They look at me, look at one another, say something to each other in low voices, then burst out in loud laughter while staring at me.
      I am simply amazed at such ignorant behaviour, but too tired to react or protest about it! :confused:

      As it is, I’ll chalk-up today’s incident as just one more little problem in this town and in this situation. I guess I shouldn’t be surprised if this is the way some people think around here. These kinds of attitudes are one of the reasons why stuff like ‘my case’ happens, and why it isn’t dealt with.

      PS: Hope no one minds me posting this thread. I just needed to get it out of my system–like a thorn, or a bee-sting. Sorry it’s so negative.

    • Anonymous
      July 9, 2009 at 8:59 am

      Good morning DU.
      I don’t know where you live but if I lived there and could I would get out NOW. What a sic place.
      The person that you called a friend is not a friend as friends do not do that to someone. I wonder what her faith is and the teaching her church is putting out.
      I would slame the door on this person and anyone like her. This is one of the many reasons I do not go to a church. Here in my town a church has posted a sign saying that (ISLAM IS OF SATIN) When you hear the church leader speak you can see why they are as they are.
      DU let what you heard pass to the father. Try to let it go and think of yourself. Remember you COME 1ST. The ones making fun of you look at them say nothing and silentley ask Father for good things for them.
      Do not react to your friends judgment of you. By saying nothing and closeing the door on her and others as she is will get your point across. If she calls have caller ID and let the phone do the talking.
      You have true friends here and we care and I am sure at this moment you have many praying for you. Please do not feel bad about venting your pain. We are here for that. I am praying for you and for the sickness around you. Remember what goes around comes around.
      Spirtual love (Steve)

    • Anonymous
      July 10, 2009 at 9:21 am

      Thank-you very much for your message of encouragement, Steve.
      I am very glad to have the support of people on this site who understand and will give affirmation when it is needed. My mind was reeling from the comments of the person I mentioned in my post, but the inner core of reason in my mind has been at work to sort things out, and I’m so grateful for your prayers. I have felt them, and I have been strengthened at this time.

      I have lived in this town for only 11 1/2 years, but when I came here I noticed many problems that the people accept, even defend.
      Last night I did a mental review of the changes I’ve seen here in all this time, and actually, there have been some significant ones, but certainly at a cost to the people that suffered due to the problems beforehand.

      I’ve come to the conclusion that some good may come out of what has happened to me (the crippling and job loss from the flu shot reaction/07).
      Since I had no vehicle for all this time in my residency here, everyone saw me walking about, riding my bike for groceries, hiking in the nearby hills and picking berries for the Farmer’s market baking I did, fishing to put food on the table, teaching piano and guitar for all these years.

      Now for the past 20 months, they see a different me, crippled and changed; all students fallen away. There are object lessons for anyone who is a thinking person here. There are questions and observations to be made, especially in a small town. I believe that God is accomplishing His purposes, and will bring some good out of what has happened to me. Something good will somehow come out of this destructive and trying situation, because good will triumph over the mistakes and/or malice of others.

      The person I spoke of in my last post is a woman who is soon to go into seclusion as a nun in a convent. I was raised to think & reason and do.
      Later on in life, I made a spiritual committment of faith in Christ. I believe that there is much evil in this world, and it comes through many avenues, but that truth is one of the major weapons of salvation from the destructive powers of evil. I believe that God is the author of truth, and the defender of truth, and that He desires good to win over evil. Overcoming the problems we have in this world will require an honest assessment of the facts, and an application of all our resources in order to bring about change for the better.
      I have some points to ponder, which I will do as I go about my day, and I wish everyone here God’s Blessings and help in your own lives!
      Will be in touch.

    • Anonymous
      July 10, 2009 at 4:54 pm

      Thank you for your reply to my post. I am spirtual and do not attend a church but I accept others and their beliefs.
      I like your attitude and I was taught many moons ago that everything that happens in our life is for a reason. I also got GBS from a flu shot. I was given the chance to see how rude others can be when useing a wheel chair and walker. I also saw how careing some were.
      You mention this woman was going to become a nun. She will get an attitude adjustment real fast with the older sisters..
      Have you read the book THE SHACK. I will say no more about it but that it was an eye opener for me.Remember those that have had fun hurting you will have their day. Forgive them and you keep seeing the light and being postive and you will make the turn and start on your new path which will be smooth and soft.
      My prayers Steve

    • Anonymous
      July 11, 2009 at 12:01 am

      “The Shack” is an amazing book, very thought provoking.

      Other people can be cruel even tho some are not aware that they are. Sometimes I didn’t want to hear 1 more word of advice and then I realized the person wanted to help but didn’t know how. I often wonder how compassionate I was before receiving the “GBS frame of reference”!

      [I]The victim should never be blamed[/I] and I am sorry that it was handed to you in that manner. Please remember that those of us on these forums do know much better what you are dealing with. We want to share in your sorrows and joys. This is a great and compassionate family to belong to even if you never intended to be a part of us!! Never fear coming here and letting us listen. Hugs for you 🙂

    • Anonymous
      July 11, 2009 at 10:37 am

      Thanks! I’ll see if my library has that book.

      Yesterday, I was trying to do some gardening work. Suddenly I realized I was crawling around on the ground and up and down the steps on all fours while I worked. Because my back and the rest of my muscles have weakened so much, I get very tired and weak after a little bit of lifting or physical work.
      If people see me like this, public opinion of me will again worsen. The doctor has told me he can’t help me. He still states that there is nothing wrong with me that he can see, and only asked me if I would like to see a psychiatrist for “my stress”.

      I know very well that he is hiding his real opinion of the state of my health, because I can read it in his face, and can see him watching all of my motions, and analyzing them. He’s doing a “damage-control”. He just won’t admit what he doesn’t have to, because then that would lead to accountability on the part of the staff for the way they’ve all dealt with me from the start of my illness.

      Time will be my ally to prove my case with these people. They will have to acknowledge what has happened to me, sooner or later; but I wouldn’t be surprised if they keep their blinders on until I can’t move my legs at all.
      I think I’m losing more muscle because of having no physiotherapy in my case. I’ve got about 1/3 of my former muscle strength, and I assume the rest has been damaged. For the 20 months I’ve suffered and struggled with this crippling, I’ve noticed some of my other muscles are under severe strain, and my whole body is gradually becoming even more uncoordinated and shaky, probably due to the imbalance of muscles, as the strain takes its course. My lower-back muscles were hardest hit during the severity of my illness, and my legs have been crippled ever since. I haven’t been able to get back the muscle strength or co-ordination there, and they’re having a hard time supporting my body. Sitting and resting helps; then I can go on again for a while. If I have to go up a small incline in the sidewalk, I have to creep up it in tiny steps, rather than being able to take an upward step the way I used to. If I see a rough part in the sidewalk ahead, I have to go around it; I can’t manoever through it, because as soon as I walk on a very rough surface, my feet feel the different textures of the surface, my brain gets confused about how to cope with walking on it, and I lose my balance, and stagger all over it.


    • July 12, 2009 at 8:52 pm

      I wish we all would be able to get the justice or recognition for our ailments that we deserve. It is not a figment of our imagination, it is real.

      I actually had a dr that would make sure I understood whatever his advice was to me was just his opinion but may not be medically sound. I guess he was trying to cover his butt in case of a lawsuit or maybe he had been sued. I don’t know. It was difficult being treated by him because I wanted him to be honest with me, be open, aggressive in my treatment. Not afraid I would sue him. Sad thing was, most of what he told me were things I had researched on my own and they WERE medically accepted.

      I sure hope you find answers or wish you were able to be somewhere you were accepted. No one deserves to be put thru so much when life has already put ya thru the wringer! *hug*

    • Anonymous
      July 13, 2009 at 9:50 pm

      For me, I guess, at this point I would not be sitting back and waiting. I would be in this dr’s office every day. I would do what ever it takes to get heard and understood. If it meant seeing a psychiatrist, then that is what I would do….surely he would know whether you are “faking” or not. I would go only as a way to prove to my dr. that I am open to anything at this point and if what you say is true, then to disprove the first dr’s assessment/diagnosis of me.

      In Canada, we have health care without cost so there is no charge to you to see him as often as you can. I would also be reporting him to the College of Physicians and Surgeons. Their body is there to protect the public from dr.s who break the law, misdiagnosis, etc. Take the bull by the horns and get an investigation going if you think he is misdiagnosing you.

      Only you know the truth about your condition at this point…that is to say, no one, not even us, can know what you are experiencing at this moment, so it is only you who can take charge and go at this issue.

      I do not live far from you and my offer still stands to be of some assistance if I can. Hang in there.

    • Anonymous
      July 17, 2009 at 11:49 pm

      Thanks very much for replying.
      I appreciate your prayers that God will help me cope in this trying and complex situation.
      1. Is an MRI an invasive, or dangerous procedure? I am allergic to numerous chemicals, dye being one of them, and the last time I was injected with dye during a medical procedure, I went into convulsions.
      2. Are the people who have had all the procedures, tests, treatments, meds, etc. any better off than those of us who have gone without them?
      Do these doctors really know or care what they’re doing with us, or is natural healing a safer and better course?

    • July 19, 2009 at 7:36 pm

      [QUOTE=D.U.]Thanks very much for replying.
      I appreciate your prayers that God will help me cope in this trying and complex situation.
      1. Is an MRI an invasive, or dangerous procedure? I am allergic to numerous chemicals, dye being one of them, and the last time I was injected with dye during a medical procedure, I went into convulsions.
      2. Are the people who have had all the procedures, tests, treatments, meds, etc. any better off than those of us who have gone without them?
      Do these doctors really know or care what they’re doing with us, or is natural healing a safer and better course?[/QUOTE]
      An MRI is not a dangerous or invasive procedure. You have no injections. I have had GBS 3 times and had no IVIG or treatment the first time. I got well in one year. The second time I had the pheresus, blood cleansing. I got well in 14 months or so. The last time, I had IVIG and was better in one year. So I don’t know whether I was better off with the procedures. I just needed to do something that the doctors said would help me. Doctors do care about you, at least mine did. Good luck and prayers for your recovery.

    • Anonymous
      July 24, 2009 at 10:49 pm

      Thanks for the reply.
      I thought that an MRI could sometimes cause kidney failure (I’ve had trouble with edema).
      I’m afraid of losing more mobility in my hands, and losing the remainder of my musical ability to earn a living. The inability to tell hot from cold on my hands and feet has reoccurred lately, and any swelling in my hands really impairs my ability to function. I keep dropping things.

      Jan83, I’ve read through your post, and can only say that all doctors are not the same. Mine has chosen to ignore and by-pass what I, my students and the whole town have witnessed for over 20 months. Systemic lack of acknowledgment = No accountability.
      It’s a sad situation, but many others have experienced the same thing, only in different circumstances. Contrary to what many people think about the health care system in Canada, patients don’t have continual access to appointments with their doctors. There are many limits as stated in the rules, and my doctor has refused to deal with this situation from the start. I just can’t believe all of this is happening sometimes, it’s like a nightmare.
      The bottom line is that this doctor has now told me that he cannot help me: not with the pain, the crippling, rehab or physio, my circumstances, my loss of work, all of it. The only thing he is willing to acknowledge, in a very confusing and wordy way, is that I am stressed because of these symptoms, and could suggest a referral to a psychiatrist on those terms.
      And I think that is irresponsible and negligent on his part.
      It’s not the first time I’ve seen problems in the system, or seen authority figures do this type of thing. It’s the old tactical manoeuver of: delay, deny, distort, discredit, destroy.
      But I’ve also lived long enough to see the tables turned sometimes–and accountability and justice prevail at last.
      If those in power would just remember that they are accountable to God, some of these situations wouldn’t occur to begin with, and others would have a better chance of fair and honest resolution.

      But I really don’t feel capable of righting the wrongs in the system, or with this doctor; I have no energy for this conflict. I’m sick, injured and damaged, and have gone to him for help again and again, and he has denied me. At best, the only thing I can hope for now is that I will be able to heal enough to be able to recover, and continue my work. I’ll have to find my own way through all of this, as well as answers to these medical problems.

    • Anonymous
      July 26, 2009 at 5:36 am

      Donna, I’m really sorry for all of the pain you are dealing with. A doctor who could care less really messes with the mind and emotions which only makes the physical worse. I will keep you in my prayers. Many hugs.

    • Anonymous
      July 26, 2009 at 8:54 am

      Du The people who are laughing at you tell them what are you laughing at? See if they have the guts to tell you. I am being harassed and bullied at work from some people who don’t believe I have a problem. That makes it hard on me. I was off work for 4 months due to a major depression.

      Du I want to know due you have swelling in your hands? I have swelling in my hands which I was told was tendinitis 2 years ago besides having CIDP but I wonder if it the CIDP causing the inflammation in my hands and my hearing loss.

      If you could find a new Dr do Dr’s like that should be reported to College of Physicians and Surgeons.
      I live in Ontario Canada and I know our health system isn’t perfect but sometimes it’s because of some idiot doctors.

      Take Care


    • Anonymous
      July 26, 2009 at 10:42 am

      Ever since this happened, I’ve had trouble picking up things with my hands, trouble telling hot from cold on my hands and feet, trouble with dropping things over and over again. My hands and feet and legs are quite swollen most of the time, but mainly it’s my co-ordination which has been completely messed-up since this happened.

      I walk with a constant shuffle and stagger, even when supported by a walking-cane and a medical walker. My lower back is extremely weak; I can’t lift more than 5 lbs without extreme strain; I can only walk up stairs very slowly, hanging onto a railing; walking up a sudden incline in a sidewalk is now extremely hard for me, I can only accomplish it in baby steps, till I get back on a level surface.
      My hearing was affected badly for a time, during the worst part of this illness; I could hear ringing in my ears, and had some deafness, but after a few months this changed, and now my hearing is quite acute. Loud sounds are magnified and intense, and sudden noises actually cause me to tremble all over for half a minute, before I can get it under control. I can no longer stand to hear music, unless it is very quiet, and only for a few moments at a time.
      My vision has been damaged from this illness. I see large white spots all the time in my left peripheral vision; also, for the past few months, I keep getting sudden flickerings in my vision throughout the day (like a light going off and on in a dark room). I told my doctor this during my last visit, but he just ignored it, as usual. I’m thinking that an optometrist would be able to check this out for me, but the appointment is very expensive, and also I’d have travel expenses.

      I’ve worked very hard in this town for over 11 years as a music teacher, accomodating people at all times and denying myself any social life or regular hours, and yet it looks like it’s all going down the drain now. Most of the time I can ignore some of the looks I get from people when they watch me struggling to walk, because I’m too exhausted and pre-occupied in my effort of placing one foot in front of the other to make steps.
      Like you, I have found out how mean and ignorant people can be at times.
      Except for the gossip-interest in this town, the difficulties of my present situation mean nothing to people, and nothing to my doctor.
      I try not to think about this doctor, because that would stress me.
      After every appointment with him, I actually have to de-stress and de-toxify because of the aggravation of dealing with him. That can take me a few days to a few weeks, so I’ve decided that thinking about him and the way he’s handled my case is not worth the effort. Instead, I try to get back my new balance and go on with my life. I’ve come to the conclusion that I can’t expect any help on the part of the medical staff here. This is how they deal with their mistakes–by ignoring the problem and sweeping it under the rug.

      On the plus side, I have increased in my capacity to endure hardship.
      I can only function slowly now, compared to the physical stamina and sports activities that were once my life-style 2 years ago, but even a turtle can get where it wants to go, a step at a time.

    • Anonymous
      July 26, 2009 at 3:51 pm

      Thanks for the information.
      2 years ago my hands were so swollen I thought I had Raynauld’s disease but they told me it was tendinitis then I was going deaf also. I tried IVIG for 5 days then went on Prednisone for 2 weeks at 50mg a day. I feel it was the prednisone that helped my hands and my hearing and improved my CIDP. I wanted more Prednisone but nobody wanted to give it to me then.

      But now hearing that you had problems with your hearing and your hands makes me realize that it must be the CIDP causing me problems with both also. My Neurologist in Ottawa said the swelling in my hands has nothing to do with my CIDP but now I am hearing a different story from you. So I will mention this to her the next time I talk to her.

      So thanks again for the information


    • Anonymous
      July 30, 2009 at 10:52 am

      Well, I’ve confirmed my MRI appointment now.
      The receptionist said I was scheduled for the IV drip while taking the MRI, then said NO, she had my name mixed up with someone else’s, but has now changed that to just a 15 minute MRI on my head. She said there are no side-effects of an MRI.
      (Wish they’d be doing one on my lower spine, because I know that my old lower-spine problem discs were also severely impacted by the GBS flu shot reaction; that’s where most of the pain is now and I haven’t been able to walk properly since then.)

      What a run-around this all is; and the only thing that’s coming from it so far is that it costs me money & time & gives me lots of aggravation, while putting money into the pockets of all else concerned.

      If I wasn’t worried about the internal damage of GBS and that perhaps there are things the pros should be documenting about my case, I’d just skip the whole process, and resign myself to my condition, and go on with my life as it is. But then again, I thought I’d be much better by now. In spite of my best efforts, I haven’t recovered as much as I though I would, and I’m always dealing with the pain and weakness now.