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Will the real depression please stand up

Discussion in 'Lifestyle Management' started by Nielk, Apr 11, 2011.

  1. Nielk

    Nielk

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    I know that I have a biological disease.
    I know that this disease is making my life unbearable.
    I know that I feel a lot of pain.
    I know I don't get enough quality sleep.
    I know that I have been put on anti depressants in the past and none have helped me.
    but,
    I also know that many times I go through stages where I feel no hope and the pain is so intense that I see no end at the tunnel and given a choice, I'd rather just check out.
    I definitely feel depressed at those times. I know that it's an outcome of being ill but other people who are clinical depressed, I'm sure also have a reason to be depressed.

    What's the difference between my feelings of depression and theirs?

    There are times when I don't look forward to do anything because I know it's going to cause me more pain. Sometimes I feel like there is no way out of this. Isn't that what clinical depressed people feel?

    I know we are all afraid of that word because it has been used against us to try to undermine our illness but couldn't it be a comorbid condition for some of us?
    I don't think it takes away from the gravity of CFS. The opposite - I think it's a testimony to what an awful illness it really is.

    I know for me the worse I feel, the more depressed I get and the more depressed I get the worse my CFS symptoms get. Like a vicious cycle.

    Anti depressants have not helped me (at all) but, there is such a thing as medication resistant clinical depression.

    Why are we so afraid to admit that at times we feel depressed? We are perpetuating the stigma associated to a very real disease too. Clinical depression is very real and painful illness. What we are doing to the clinically depressed is what the medical establishment is doing to us. Ignoring the legitimacy of the disease.
     
  2. drex13

    drex13 Senior Member

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    I think that anyone who suffers from a chronic illnes, also has to deal with depression on some level. How could they not ? Being chronically ill wears on a person both mentally and physically. The problem lieswith medical professionals, who want to jump on the word depression and make it your diagnosis and the root cause for all your troubles and that's garbage. They ask if your depressed (which of course you are sometimes because your sick all the time ), and when you answer yes.... it seems to be an "aha" moment for them. We aren't sick because we're depressed, we're depressed because we're sick.
     
  3. Nielk

    Nielk

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    drex13,

    You are 100% correct. I have myself experienced this with doctors trying to label me. But, it's with doctors who really don't know anything about CFS and it's easier to label "primary depression" then to put in the effort to educate about CFS. My doctor who specializes in CFS understands very well that the depression is the outcome of being chronically ill.

    Why don't doctors label other chronic illnesses as "depression" since I'm sure most people who are chronically ill for many years, whatever their diagnosed disease is, get depressed at times?

    I guess it's an outcome of ignorance.
     
  4. pebble

    pebble Senior Member

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    I am definitely, absolutely and categorically not depressed.

    I am justifiably hurt, shocked, frightened, sad and angry at having lost everything because of CFS.

    I am grieving the loss of my health, my independence, the life I chose for myself and used to live, relationships, the person I used to be and the future I planned.

    I am not suggesting that it is not possible for someone with CFS to also suffer from depression but it is far too convenient and considerably cheaper for the medical profession to fob us off with depression and antidepressants.

    Upton Sinclair said

    "It is difficult to get a man to understand something, when his salary depends upon his not understanding it!"

    Pain and despair are appropriate feelings when we have lost so much and face such a very different future from the one we chose and planned for ourselves.

    We are already suffering enough without them fobbing us off and trivializing our pain and suffering.

    Having our pain and suffering acknowledged is a vital part in the grief process.

    They are failing us spectacularly.

    Instead of treating our condition they cause us so much more stress, fear and frustration which causes even more pain and damage.

    Shame on them.

    I feel it is far more appropriate to understand and work through the grief process.

    On Grief and Grieving by Elisabeth Kubler-Ross and David Kessler explains the five stages of grief.

    I have read it many times and find it has helped so much.

    I am still hurt and angry but I feel that is perfectly appropriate having lost so much and having to put up with doctors who look me in the eye, pee on my leg then try and tell me its raining!
     
  5. invisible ME

    invisible ME

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    Hi Neilk,

    Thank you for starting this thread. I think this is a vitally important topic for many of us with ME/CFS. I have sometimes witnessed comments within our community that border on being dismissive of depression (and other "psychological" illnesses); and in our fervor to insist that ME/CFS is a real organic disease (which I absolutely believe), we can run the risk of reinforcing negative stereotypes about serious mental health issues. Let me be clear: on the whole, I think that a vast majority in the ME/CFS community take depression seriously, and I have witnessed many thoughtful attempts to point out the difference between major/primary depression and ME/CFS. As usual, I think the problem ultimately lies with the near total lack of understanding about ME/CFS in patient care and diagnosis.

    Consider what follows my own brainstorming on the topic:

    (1) Anyone with a serious health problem(s) is at risk for depression. People with severe physical disabilities, chronic illnesses, and (potentially) terminal diseases face a crisis in their lives. Having to deal with the daily reality of new or escalating physical (incl. cognitive, emotional) changes, challenges and limitations alone can be overwhelming. Add to that the accompanying (and sometimes drastic) changes in employment/schooling/activities/social life, financial pressure, loss of stability, loss of support from family/friends, etc... and the effects are devastating. These new realities are overwhelming, and take time to process. In my personal experience, the processing is on-going. Feelings of anger, frustration, sadness, loneliness, depression are common. For many, this experience is probably best described as grief. For some, it could lead to a diagnosis of clinical depression, and would require treatment (Rx drugs, therapy, etc), either temporarily or on an on-going basis.

    (2) Some people with ME/CFS have co-morbid clinical depression/MDD. Clinical depression might pre-date their diagnosis of ME/CFS. As with any co-morbid diagnosis, this will likely make the process of effective treatment and symptom relief more complex, particularly when symptoms of the two conditions overlap. I'm going to hazard a wild guess that getting treatment for clinical depression will be easier than treatment for ME/CFS (though complicated for the many PWCs who have low tolerance to Rx drugs). For people with co-morbid clinical depression, getting a diagnosis of ME/CFS could be a real challenge (see no. 3, below).

    (3) The clinical criteria/diagnosis overlap problem: ME/CFS and clinical depression are not synonymous. GPs following clinical diagnostic guidelines similar to those put out be the CDC will be hard-pressed to differentiate these two diseases. As we are all painfully aware, most GPs are both inadequately educated about ME/CFS, and a bit trigger happy with the anti-depressant script. As a result, many many PWCs have had their ME/CFS mistaken for depression by (probably multiple) healthcare providers. This problem can only be remedied by better physician awareness/education. Unfortunately, PWCs are SO tired of having to explain to EVERYONE that they don't have depression, that PWCs who DO have depression, might feel alienated and/or stigmatized.

    (4) Lack of adequate care. PWCs struggling with depression (regardless of when or how it originates) may resist seeking treatment, for fear of having their diagnosis of ME/CFS collapsed, over-written, or generally ignored. Depression itself can make it extraordinarily difficult to reach out/seek help in general, so this is a serious issue. Similarly, PWCs often despair getting proper medical treatment for any of their symptoms, and often have poor, inadequate or even harmful medical "care". We therefore often put off or refrain from seeking intervention for new/worsening symptoms. Lack of adequate care is a concern for someone with either diagnosis and, I believe, can be compounded for PWCs w/depression.

    (5) Problems associated with diagnosis through elimination. I cannot think of any other disease that makes having co-morbid diagnoses quite so difficult. In my opinion, this is largely the result of inadequate diagnostic (and research) guidelines. Obviously, many PWCs know from experience that it is entirely possible to have ME/CFS as well as any other number of diseases/illnesses. In practice though, PWCs run the risk of having a diagnosis of ME/CFS "excluded" when and if they are diagnosed with another disease. It stands to reason that if your GP believes you "just" have depression s/he is probably not going to treat (or provide symptom relief for) serious ME/CFS symptoms, such as pain. However, a failure to identify and treat clinical depression could result in serious consequences, including self-harm and suicide. It is absolutely intolerable that PWCs be forced to make these kind of choices, given the severity of the consequences. **I believe this is why many of the knowledgable ME/CFS MDs (Montoya, Klimas, Bell, et al) stress the importance of diagnosing and treating depression, where it exists.

    ... I think these are just a few of the topics that need to be recognized, both within our communities, and in the medical research and practice.

    A few more thoughts...

    Why are we not being offered (grief) counseling at the onset of illness/diagnosis?
    - Are people with other severe diseases offered this, and if so, what kinds of experiences have people had with those services?
    Need to better distinguish between PWCs w/ co-morbid depression, and people w/clinical depression falsely included in the CDC (etc) "CFS" umbrella - for research and treatment purposes.
    Need better support services for PWCs dealing with both grief and/or clinical depression within our communities. What would this look like?
    I believe that sometimes what MDs call "depression" really is grief (applies more widely than ME/CFS), and for some Rx is not the only - or the best - means of dealing with this. How can we change this conversation??

    Sorry this was so long and ramble-y.

    - invisible ME
     
  6. invisible ME

    invisible ME

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    Well said, pebble!! :)

    Actually, great post overall, and thanks for reminding me to read Kubler-Ross.
     
  7. Nielk

    Nielk

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    hi invisible ME,

    Thank you for your well thought out organized post.

    I agree wit all you are saying. It's #5 that really ignited my need to start this post all together. We ca't ignore the amount of desperate PWCs who have nowhere to turn and end up either trying to execute a suicide and others who sadly are successful.
    I think there is a great need to address this problem in our community. If we are taught not to even mention the word "depressed", people are going to be afraid to come and open up their feelings which is so important to do. Are we at fault here for not allowing people to express their desperation and depression? Obviously someone who is considering suicide is majorly depressed. I feel that if we are taught that it's valid and okay to "feel depressed" and to actually express it, we would do a big service for many suffering PWCs.
     
  8. Wonko

    Wonko Senior Member

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    Why "obviously"?

    As there are situations where suicide is a perfectly rational response why state that "obviously" anyone considering suicide "is majorly depressed"?
     
  9. Nielk

    Nielk

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    What rational reason can you think of for a person who is not depressed to commit suicide?
     
  10. floydguy

    floydguy Senior Member

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    People with chronic illness do it all the time.
     
  11. Nielk

    Nielk

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    You don't think that they do it out of desperation? Because they have no other way out of their pain?
    You think they calmly decide to rationally weigh the pros and cons like an Algebra problem and decide that on a specific day it makes sense to die?
     
  12. floydguy

    floydguy Senior Member

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    Desperation and depression are not the same thing. In any event, yes I personally know someone who picked the time to go due to chronic illness.
     
  13. kday

    kday Senior Member

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    Torture.

    When I was at my illest I was being tortured with chest pain and such severe anxiety they had to sedate me with drugs that should be able to tranquilize a horse.

    At one point the torture and pain was so much, that I just couldn't stop crying with a never ending panic attack. I attempted to jump out of the car on the highway coming home from the hospital, but my mom grabbed my shirt while she was driving, and it tore a hole in it.

    I get angry about things, but it's because my brain gets stuck in high beta (anxiety).

    And keep in mind, since being ill, I have never experienced depression. In fact, I don't think it's even possible for me to get to that spectrum. My brain is pretty much stuck in high beta anxiety. It's much better, but it can still be debilitating. Depressed people have a slow brain wave pattern.

    I have had depression in the past. I know what it feels like. I have not felt a true depression being ill. However, I'd rather have depression for sure.

    However, I think people get anxiety and depression mixed up. Many (or most?) with anxiety alternate between the two.
     
  14. Nielk

    Nielk

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    I am sure that there are exceptions, like the person you knew. Just because they picked the time though is not an indication that they were not depressed. I take your word though. You knew this person.
    I would tend to think though that the majority of people who decide to check out are deeply depressed.
     
  15. ixchelkali

    ixchelkali Senior Member

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    I have been depressed and I have been ill, and I can tell the difference. I can tell the difference the same way someone with major depressive disorder can tell when they get the flu: the symptoms are different and it doesn't feel the same. I could even explain that difference to a doctor if they would care to listen. Unfortunately, most doctors have neither the time nor the inclination to hear it. And if I say to a doctor that I have been depressed in the past, even if I no longer am, I lose all credibility. It's makes it difficult to get treatment for the physical illness. That is the doctors' prejudice at work, not mine.

    I have had family and friends who suffered from mental illness. I, too, have wondered if I was contributing to the stigma against mental illness. But I don't believe that I am. If I had a mental illness I wouldn't hesitate to get treated. As much as practical, I would be open about it. I know this is true, because I have done it. The reason I so staunchly deny that ME/CFS is not a mental illness, is not a somatoform disorder, is that it isn't. It just isn't. I know this from the inside out. But I also know it from the evidence. The model of this as a somatoform disorder doesn't even make sense. It doesn't fit the facts.

    I know, you aren't suggesting that ME/CFS is psychosomatic, functional, somatoform, or whatever the euphamism du jour is. I also know that people with ME/CFS can get depressed, like anybody else. We can also suffer from grief, which is often mistaken for depression but isn't quite the same.

    The problem is that ME/CFS has its own stigma. It is the stigma of a disease for which the cause isn't known, a disease that doctors don't understand, a disease that doesn't show up on a single, simple lab test. Most doctors don't like having to say "I don't know" and many of them would rather say "You must be nuts." And in the case of ME/CFS, many medical schools teach them that's it's not a real disease or that it is psychological. Plus, there has been a long-term campaign of misinformation and innuendo to that effect, and if a doctor checks the usual sources, such as the CDC website, they find the same thing.

    The upshot of this is that if we talk about our depression, we feed the false stereotype. And that stereotype can and does cause real harm to patients. It makes it easy for doctors to wash their hands of us. If we don't talk about it, don't get treated when we are depressed, try to pretend it doesn't happen, that harms us, too. We're damned if we do, damned if we don't.

    I don't know what the answer is. I think we need to address our depression when it happens, and try not to let doctors dismiss us. I think it's also important not to let them call us depressed when we aren't. I recently discovered that a doctor put depression into my chart, and I'm trying to get enough energy to fight to have it removed. Not because I'm ashamed to have it on my chart, but because it's a misdiagnosis. I would feel the same way if my chart said I was diabetic, and I would insist that be changed, too. It's just much harder to disprove a diagnosis of depression.
     
  16. invisible ME

    invisible ME

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    Nielk,

    I also see this as a pressing issue. It's important to me that people dealing with depression feel they can speak openly about those experiences with other PWCs. After all, for many of us, ME/CFS communities are where we feel most understood, and can express our experiences freely. I think that for any group of people who are marginalized from society at large, the experience of rejection (or marginalization) from within their own communities is doubly painful. I think it's very important to create a sense of support around this issue, so that people feel they can reach out without fear of being stigmatized.

    We have to find a way to effectively communicate the distinction between ME/CFS and depression to the outside world (doctors, researchers, friends, family) without excluding or minimizing those of us who do deal with depression. It pains me to think that anyone might feel they can't reach out, ask for help, ask questions, get information, etc because of this issue. The repercussions are too serious to ignore.

    - invisible ME
     
  17. Boule de feu

    Boule de feu Senior Member

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    Nielk, you are asking: What is the difference between my feelings of depression and theirs?

    This question was asked during Dr. Leonard Jason's presentation at the NIH event.

    If you ask someone who has CFS: '"What would you do if tomorrow you would gain your health back?"
    A CFS sufferer would not hesitate and would have a list full of things they would like to do.

    If you'd ask the same question to someone who is depressed, the answer would be "I haven't thought about it OR I don't know."

    A person who suffers from CFS would be able to get out of his misery the minute he would gain his health back.
    It is what we call reactive depression.
    A person who suffers from depression just can't do that. It's a chemical imbalance in the brain.
    This is what we call clinical depression.

    So, just ask yourself. If tomorrow I would give you your life back, would you be able to get back on your feet, instantly?
    If the answer is yes, then you suffer from reactive depression due to your illness and not because your are suffering from depression.
     
  18. invisible ME

    invisible ME

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    Absolutely. I couldn't agree more, and your post really resonated with me. I think at heart this problem lies with the ignorance and prejudice of the doctors (ok, some doctors). And truthfully, while they may be happy to write an anti-depressant Rx, many are not that good around depression either.

    Precisely. As I see it there are two separate but overlapping problems:

    - The various diagnostic criteria for ME/CFS are too vague and don't adequately distinguish between ME/CFS and depression, or idiopathic chronic fatigue. The research is always polluted with the wrong cohorts, and that leads to a general sense of frustration around the issue of depression. Same with the diagnostic process.

    - The psychosomatic theories that are only too happy to call us all CRAZY. Not depressed, just plain old-fashioned bonkers. At the end of the day, that school of thought doesn't even seem to be arguing that we're truly suffering from a diagnosable and treatable mental illness (which would be preferable, by far), they're saying there's something terribly wrong with us. As people. And that makes the writing us off, so much easier.
     
  19. ixchelkali

    ixchelkali Senior Member

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    I've noticed that, too. Like what we suffer from is lack of moral fiber. What we need is an attitude adjustment. To just realize we aren't really sick, start getting some exercise, and get on with our lives. That we need to recognize that the people saying we aren't sick are the ones who REALLY want to help us. Someone needs to tell these supposed caring professionals that it is not therapeutic to try to convince someone that what is real, isn't real. That's crazy-making, not healing.

    Sorry, don't get me started. I seriously worry about what kind of damage they may inflict on vulnerable people.
     
  20. Nielk

    Nielk

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    Boule de feu,

    You make a very convincing argument.
    If someone were to tell me tomorrow that they can give me back my life before CFS, I would jump for joy, sing on the rooftops, clean my kitchen.

    I also understand the difference between reactive depression and clinical depression due to chemical imbalance.

    I sometimes just cry without being able to stop. Yes, it's reactive but, the feeling is the same. Maybe people call it grief. I'm not sure what to call it. I just know that I'm sad a lot.
     

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