The Relationship between Psychological Well-Being and Disability

Discussion in 'Fibromyalgia Main Forum' started by Noralyn, Dec 28, 2005.

  1. Noralyn

    Noralyn New Member

    I'm not sure if the complete title is viewable, but it is the title of an abstract, "The Relationship between Psychological Well-Being and Disability in Women with Fibromyalgia".
    There seems to be so many articles relating to this issue that after reading this one, I felt the desire to voice an opinion. Whether the outcomes of these studies have any "facts" bearing weight, I do not know, however....

    Number 1)- Fibromyalgia has no test to verify that one actually has "a condition". Due to this, many people tend to not believe it even exists. This includes, friends, family, co-workers, employers, and yes even the Medical Society. The illnesses with which Fibromyalgia is compared to, have tests to validate one's illness, thereby giving legitimacy to it and acceptance from ones environment. This can and does have a extremely "STRONG" negative impact on how one with the illness of FMS is perceived and treated. The illness of FMS gives birth and attaches to a person with FMS a whole new world of adjectives/labels, as well as a host of other words, snide remarks, perceptions whispers, sarcastic body language from others, talking behind FMSer's back, no one wants to associate with you, and trust me, I could go on and on.

    How would these study results come out if the other illnesses had these implications applied to them in everyday life, from all different walks of life, ever since the very first Dr. appointment, and there were no test to validate them.? This is years I'm speaking of. Almost like being brain-washed.

    Number 2)- It may have changed somewhat now, but as can be recalled years back by some FMSers, and maybe all of them, it seems it was the Medical Society who first "planted the seed" that if you come in and said you thought you may have FMS, you were disregarded as having a Mental Health problem,- depressed I think it was- and sent off to have an appt. scheduled in Behavioral Health, if not just given a prescription for an antidepressant, take 2, and call me in the morning attitude (but don't really call me). Made one feel kind of ashamed. We must keep in mind that this scenario does not happen just once or twice, oh no, this scenario which consists of but not limited to: "made to feel as if you are lessor of a person than others", not taken seriously but instead mockingly intimidated, belittled, given "The Look", why are you wasting my time attitude, made to feel ashamed, told over and over that you hurt because you are depressed, and again I could continue with examples for quite some time -this scenario keeps going on for years and years, over and over. However, I think most if not all FMSers who have experienced this will say, and I agree, the worst has to be; when on top of all this doubt, intimidation, and downright made to feel as if you are a liar, to top it off..."You are now a drug seeker!" Just another low-life looking for a way to get a quick buzz liar. Now it's time to leave with tears in our eyes because we have been labeled dirty, told we are depressed from day one so we must be. What else could be wrong if nothing shows up on tests. Plus, we have to go home and suffer in our physical pain.

    Then one day, a long, long time from that very first Dr. appt. when this hideous journey began, the fortunate FMSer will have that long awaited appointment with the Dr. who believes, cares, is concerned, and in his/her compassionate Intake, we quite don't know if this is for real!!

    There are numerous MD articles with this same opinion. They are aware and compassionate to such an injust labeling to a person who truthfully and literally does not feel well physically. I'm not saying depression is nowhere to be found. But, there are a host of illnesses and a host of them are attached to depresson also. When a person has there independence, tons of physical abilities, ripped away or slithered away like a snake, and their whole life turned around and upside down, well I guess i would expect to see depression. I can't think of one person whom these actions would place a smile upon their face.

    Please excuse any things I may have said or typos that appear stupid as well as depressesd responses, for I too have FMS.
  2. Noralyn

    Noralyn New Member

    and thank you much ggiggi for your support. I appreciate it.
    Noralyn
  3. minimonkey

    minimonkey New Member

    I comletely agree with everything you posted! (and nothing appears stupid at all-- quite well stated actually.) I think we've all had these experiences over the years.

    I read that article, or one very much like it. The conclusion of the article in question was that the medical community needs to find ways to keep emotionally distraught people from overusing the healthcare system in order to keep costs down. Gee, thanks guys -- that really helps us out a lot... grrrr.
  4. sydneysider

    sydneysider Member

    You are so right. If only these attitudes would stop we might have more of a chance of getting to the bottom of what is making us sick, and what can be done to help.

    I, like most of us, have gone through a lot of crap. However, many health conditions were considered psychological until the real reasons were known. It is a pity that so many such well educated people as doctors haven't learnt from history.

    In my case, a few of my doctors have already wound up with egg on their face, when this year I was found to have a damaged disk in my neck. It's only taken 25 years to find that out!!!Numerous specialists have told me that nothing significant was wrong. One even blamed my dizziness symptom on low self esteem. Well, they were all wrong.

    I have found that it is not uncommon for doctors to become aggressive, or downputting to patients, when they can't figure out what is wrong, or what to do about it.

    Over the years I have come to realise when talking to people, that doctors make quite a few mistakes. If they are baffled by something, then they will often cover this up. In truth, there are many health conditions which do not have a 'test' that proves they exist(eg migraine, asthma). There are conditions that are diagnosed only by symptoms, or by symptoms plus tests that can help with the diagnosis, and again, doctors can get it wrong.

    However, over the years I have found that attitudes are changing. Doctors aren't so quick to do the eye rolling, smirking thing. Since the internet started we are no longer isolated. We can be well informed, and gain confidence from conecting with people in similar situations. I have gained great strength from this.

    These issues are SO difficult. I have faith that one day the answers will be found, and get a little pleasure in thinking that those who have taken these attitudes towards us will one day be eating their words.

  5. Noralyn

    Noralyn New Member

    ,,,what so many of us have actually been through and to see this in print, how we, in our opinions, have been disgracefully abused.

    I didn't start to descend to that lowest point of self-esteem until I was humiliated over and over as I searched for help. Then this gets turned around and called "Dr. Shopping" which ends up with the patient being:
    "most incorrectly, disgracefully, shamefelly labelled" a drug seeker. This type of so called Dr. shopping involved with any patient for that matter, is continuing a search for the Dr. who knows and understands FMS and what can be it's debilitating symptoms. A Dr. who is compassionate and does not believe that a human lfe should be wasted and tormented in pain from day to day; hour to hour. Not only is the patient's life negatively impacted but the family is torn at times and troubled.

    The search for help is no different than "shopping" for the "right" counselor either. This can take years. I do not only take medicine. After what took many years of searching, I have found the coumseling I need to cope, and this process took "counselor shopping". Not for drugs but for the most beneficial Counselor. I saw a counselor once and only once, because during this wasted hour she proceeded to tell me, "I'm glad the SOB (only she said it in it's entirety) is dead". This was in reference to my Dad who had shot himself after 10 years of pain suffering. Hell I was there to find help to rid myself of anger and here she was madder than I was!! Not waht I needed. I thought I was going to end up being the counselor!! lol

    OK..I can get carried away beause I have many chapters to my FMS journey as most do. So, I'll stop here and let someone else have their say, and come back later. I have not ever been here yet, however, after "message board shopping" :-] I feel very welcomed, I see respect for all, and stopping in for a visit here is most enjoyable and so pleasant to visit!

    Noralyn

    Thanks for this opportunity. I have been an avid reader here and do get the newsletter, but I can see I have missed alot by not knocking on the message board "click" on left side of menu.
  6. Jen102

    Jen102 New Member

    whatit would be like to have cancer and have people tell you that you look fine, that you don't look ill, that perhaps you are just depressed rather than ill, that you should just get involved in life as you have too much free time on your hands, etc., etc? It just wouldn't happen and people would be appalled if you treated someone with cancer in such a fashion. I think part of it is that they can show on medical tests that you have illness--cancer cells, but I think it is more than that. People respect cancer because everyone knows someone who has had it, and people know that it can happen to them. They want compassion should it happen to them, so they provide it to others (at least part of their motivation). With FMS or CFS, they don't think it can happen to them. They think you should just overcome it or ignore it and it will go away. They can't imagine what it is like to have so little energy that you can't sit up or chew your food.

    (Also, we try to be as normal as possible. We present ourselves at our bbest times and stay home and hide during the worst times. People really don't realize how sick and disabled we are.)

    We are needy just as cancer patients are. The difference is that others meet the needs of people with cancer, but not our needs. Instead we are shoved into the corner and told to get a life. That just makes it a more lonely and difficult path than it was before.

    Please don't think I am minimizing the difficult plight of those with cancer. And there are some unfortunate people who have cancer who get no help, just like there are people with FMS who get no help. I am just making a generalization of what I have observed.

    Have you found your good doc? If not, you are close to Dr. Karen Vrchota in Winona. You couldn't find a better fms/cfs doc. Your comments were very well said. Blessings to you. Jen102
  7. Jen102

    Jen102 New Member

    whatit would be like to have cancer and have people tell you that you look fine, that you don't look ill, that perhaps you are just depressed rather than ill, that you should just get involved in life as you have too much free time on your hands, etc., etc? It just wouldn't happen and people would be appalled if you treated someone with cancer in such a fashion. I think part of it is that they can show on medical tests that you have illness--cancer cells, but I think it is more than that. People respect cancer because everyone knows someone who has had it, and people know that it can happen to them. They want compassion should it happen to them, so they provide it to others (at least part of their motivation). With FMS or CFS, they don't think it can happen to them. They think you should just overcome it or ignore it and it will go away. They can't imagine what it is like to have so little energy that you can't sit up or chew your food.

    (Also, we try to be as normal as possible. We present ourselves at our bbest times and stay home and hide during the worst times. People really don't realize how sick and disabled we are.)

    We are needy just as cancer patients are. The difference is that others meet the needs of people with cancer, but not our needs. Instead we are shoved into the corner and told to get a life. That just makes it a more lonely and difficult path than it was before.

    Please don't think I am minimizing the difficult plight of those with cancer. And there are some unfortunate people who have cancer who get no help, just like there are people with FMS who get no help. I am just making a generalization of what I have observed.

    Have you found your good doc? If not, you are close to Dr. Karen Vrchota in Winona. You couldn't find a better fms/cfs doc. Your comments were very well said. Blessings to you. Jen102
  8. Noralyn

    Noralyn New Member

    jen...you bring up something that is so true and has always made me wonder why? Why do people with FMS/CFS always try to hide their illness? It seems it is always the same story.

    The only thing which comes to mind is we feel we have to hide it ecause of societyand how it is perceived as not being a real illness. It is gaining some weight, but it I don't feel as if alot of people in my world take it seriously either. I am guilty myself of trying to conceal how awful I really feel.

    But as I said in the beginning i my first post...I believe this is all started from how we are treated from the very beginning of trying to find help. People with the Capital letters after their name. Letters which bring to one's mind that they are the "one" who has spent years learning so how can we be right and they be wrong? Thus the shame and hiding and fear someone will think we are crazyily depressed and this illness is all in our heads or we are looking for attention and also hypochondriacs (sp).

    I have many articles ny MD's who agree withthis and if my memory serves me right, isn't the article "Blowin'In The Wind" an article here at ImmuneSuport. This Dr. knows.

    Noralyn
  9. FightinPain

    FightinPain New Member

    Noralyn,
    I believe you have hit the 'nail on the head'. I have had FMS for about 4 yrs now, but I am really beginning to think it started earlier, and I just didn't know what it was. I had a horse accident that changed my life, and this is where,I believe, it first started.

    I worked with Cooper Tire & Rubber as a First Stage Tire Builder of 14" tires. I started having these stabbing pains in my wrists and I couldn't go on and on. It was VERY painful. My hands started 'freezing' up on me, and several times upon waking up in the morning, I had to run hot water over my hands to get them straightened out. My doctor (then) told me I had Carpel Tunnel, and they wanted to operate. My Supervisor wanted me to go to the Company's doctor, WComp doctor, and I did. He put me on light duty, which was fine with me, at least I got to work and do something. At the end of that, I went to another doctor after I married and moved to Georgia, and have been sent to one doc after another with Fibro. Mostly my Psych Doctor, because in the beginning I cried all the time because I hurt all the time for 'no' reason.

    I also had one doctor refuse to see me again because my husband told him that somebody has to help her, she's been in pain for 5 years now.And all you doctors do is send her to another doctor and keep 'passing the buck'. So, that doctor refused to see me anymore and referred me to a Pain Mgmt Doctor.

    Now, I have had every kind of test run imagineable. I recently had an MRI done of my shoulder and neck. I am having stabbing, piercing pains in the shoulder that goes down my arm and anytime I barely lift my arm, I cry out in pain. I received the MRI results today and they said there is nothing wrong with me....PERIOD...He did tell me to go to water therapy at the hospital...well, our part of this session to pay is $60....And he wants me to go 3 times a week!!That's $180 a week! We can't possibly pay out that kind of money with me not working. I can't get a job because 1) I have so many doctors appts, that no employer would put up with me taking off so many times. 2) If I worked, I wouldn't have the time to go to therapys. I did try to go back to work, and I worked 4 days, and then had a relapse. So, WHAT DO I DO????? I really need a doctor that knows ALL about Fibro and is willing to work with me instead of making me feel that I am a liar and my pain 'isn't really there'. I have worked all of my life, and I have had many great jobs, and I enjoy working, but I can't work the way I am now. Jeepers, I can't even remember what all I just wrote; my husband gets on to me all the time because he will ask me something,. and I'll answer him, but just a minute or two later, I ask the question again, that he had just answered. CAN SOMEONE HELP ME FIND A DOCTOR WHO AT LEAST sympathsis with my condition, and help me to get back to the road of health?????????
    I really need a doctor that cares and can tell me what to do.
  10. Noralyn

    Noralyn New Member

    I feel for you fightinpain.

    I just lost my awesome Dr. whom it took me 10 years and thousands of $ to find. I can't go into why, but the reasons are understandable on his part. Nothing legal, just too much adversity i family life in past years. Solo Dr.. and does not work for institution. Which brings up another subject:

    I think there is a difference here. When a Dr. works for institution there is the need and desire to make themselves look impressive. Productivity is a big thing. A solo practice MD has no one to impress with thier progress notes or their treatment plans and does not have to be concerned about their review at the end of the year by a big clinic they work for. I feel they are more helpful and genuinely concerned about helping their patient. I'm too tired right now to think of all the words but I think this makes sense as to what I am trying to point out.

    One thing I always do is get a copy of all my notes. After an appt. I cal ROI and ask for it to be sent to me. many times I ahve been surprised when I see that the note is turned around to make the MD look good and not at all gives credit to the points that I made. Sometimes this credit is aimeds at the MD or provider.

    I want to write more but I need to go to bed. The words just won't come and my foot is in killer pain.

    I am so sad over losing my awesome blessed Dr. :-[ I don't know what I'll do> I do not like clinics.

    Have a good night all,
    Noralyn